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Contract Final ReportGuide to Patient and Family Engagement:Environmental Scan ReportPrepared for:Agency for Healthcare Research and QualityRockville, MDContract HHSA 290-200-600019Prepared by:American Institutes for ResearchMaureen Maurer, MPHPam Dardess, MPHKristin L. Carman, PhDKaren Frazier, MALauren SmeedingAHRQ Publication No. 12-0042-EFMay 2012
This document is in the public domain and may be used and reprinted without furtherpermission.Suggested citation:Maurer M, Dardess P, Carman, KL, et al. Guide to Patient and Family Engagement:Environmental Scan Report. (Prepared by American Institutes for Research under contractHHSA 290-200-600019). AHRQ Publication No. 12-0042-EF. Rockville, MD: Agency forHealthcare Research and Quality; May 2012.A complete list of tools reviewed for this report is available from Pam Dardess, MPH, SeniorResearch Analyst, American Institutes for Research, Health Program,100 Europa Drive, Suite315, Chapel Hill, NC 27517; phone 919-918-2311; fax 919-960-6983.The opinions presented in this report are those of the authors, who are responsible for its content,and do not necessarily represent the position of the U.S. Department of Health and HumanServices or the Agency for Healthcare Research and Quality.None of the authors have any affiliations or financial involvements that conflict with materialpresented in this report.ii
ContentsExecutive SummaryIntroductionBackgroundConceptualization of Patient and Family EngagementMethodsInternal Team InputKey Informant InterviewsSearch MethodologyData Abstraction and AnalysisFindingsIndividual Characteristics of Target AudiencesOrganizational ContextStrategies and InterventionsDisseminationRecommendations from Key Informant InterviewsSummary and DiscussionKnowledge Gained from the ProcessGaps IdentifiedLimitations of the ScanImplications for the GuideNext StepsReferencesAppendixesAppendix A. Draft Key Informant Interview ProtocolAppendix B. Summary of Search TermsAppendix C. List of Web Sites ReviewedAppendix D. Data Abstraction Protocoliii
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Executive SummaryThis goal of this project is to promote patient and family engagement in hospital settings bydeveloping, implementing, and evaluating the Guide to Patient and Family Engagement:Enhancing the Quality and Safety of Hospital Care (hereafter referred to as the Guide). TheGuide will comprise tools, materials, and/or training for patients, family members, healthprofessionals (e.g., hospital clinicians, staff), hospital leaders, and those who will implement thematerials in the Guide. Our preliminary vision of the Guide included four components, each witha series of “tools” (e.g., materials, resources, items for training): (1) Patient and Family ActiveInvolvement Materials; (2) Patient and Family Organizational Partnership Materials; (3) HealthProfessional Materials; and (4) Leadership and Implementation Materials. The tools in the Guideare intended to: Support the involvement of patients and family members in the safety and quality of theircare. Encourage the involvement of patients and family members in improving quality and safetywithin the hospital setting. Facilitate the creation of partnerships between health professionals and patients/familymembers. Outline the steps needed to implement changes.Purpose and MethodsThis report presents the results of the environmental scan that serves as an evidence-basedfoundation for the development of the Guide. In conducting this environmental scan, our intentwas to: be comprehensive while targeting topics and questions that are directly relevant to thegoals of the project; reflect the concepts of consumer engagement and patient- and familycentered care around the issues of patient safety and quality in the hospital setting; andincorporate diverse input and perspectives from multiple individuals and organizationsrepresenting patients, families, health professionals, and hospitals.We developed a working definition of patient and family engagement and a guiding frameworkto organize and inform our search. From the framework, we identified five main topic areas forfurther investigation:1. Individual characteristics, perspectives, and needs of the target audiences—patients, families,and health care professionals—with regard to patient and family engagement.2. Organizational context within hospitals, including culture, and its influence on patient andfamily engagement.3. Hospital-based interventions and materials that are designed to facilitate patient and familyengagement, particularly around the topics of safety and quality.4. Specific content areas for the Guide.5. Best methods for dissemination of the Guide.The environmental scan was conducted from November 2009 to February 2010 and gatheredinformation through internal team input, key informant interviews, and a review of the peerreviewed and grey literature, as well as by identifying and assessing relevant tools andinterventions. The team scanned the medical and social science peer-reviewed literature—including both descriptive qualitative and quantitative studies—using PubMed, PsycInfo,CINAHL, and the Cochrane databases. To scan the grey literature, we gathered documents from1
the Agency for Healthcare Research and Quality (AHRQ), the project team, and external expertsduring the key informant interviews. In addition, we conducted a more targeted search of110 Web sites recommended by our partners for non-peer-reviewed literature and potential tools.In total, 238 peer-reviewed and grey literature articles were reviewed and abstracted; we alsoassessed the content of 330 tools and assessed the usability of approximately 80 tools.FindingsWe have grouped our findings according to the main categories identified in the preliminaryconceptual framework: Individual characteristics, perspectives, and needs of the target audiences—patients, families,and health care professionals—with regard to patient and family engagement. Organizational context within hospitals, including structures and processes that influencepatient and family engagement. Hospital-based interventions and materials that are designed to facilitate patient and familyengagement, particularly around the topics of safety and quality.Here we briefly summarize what we learned from these three categories of information.Individual Characteristics of the Target AudiencesQuality and safety. Both patients and providers tend to think that the quality of care they receiveor give is generally good, despite evidence that suggests this is not always true. However, theydo not always share the same views of what constitutes quality or safety. Providers tend to focuson the clinical aspects of care, while patients and family members focus on interpersonalinteractions.As with quality, patients and providers can differ in their perspectives on patient safety, andpatients may not understand safety as researchers or other experts define it. Patients definepatient safety more narrowly in terms of medical errors. In addition, providers may feel thaterrors are primarily under an individual’s control and therefore place less emphasis on theimportance of system-level changes.Engagement. Conceptually, both patients and providers support patient and family involvementand participation in their own care and recognize that it can lead to better patient experiences andoutcomes. Patient and provider support for participation becomes more uncertain when patientengagement includes a higher level of involvement—for example, making diagnosis or treatmentdecisions.Most of the literature on patient and family engagement roles focuses on what patients could do(or what researchers and policymakers want patients to do) instead of discussing what behaviorspatients and family members currently engage in or would be willing to engage in during clinicalencounters.In general, the literature suggests that patients are more likely to engage when the goal relates toobtaining specific information about their care (e.g., asking questions to get information abouttheir condition, treatment, functional activities, or discharge). Patients are less likely to engagewhen faced with behaviors that seem new or confrontational (e.g., asking providers to wash theirhands or mark surgical sites).2
Barriers and facilitators. Barriers to engagement for patient and family members include fear,uncertainty, low health literacy, and provider reactions. Facilitators include self-efficacy,information, invitations to engage, and provider support. For providers, barriers to supportpatient and family engagement include professional norms and experiences, fear of litigation,and perceived level of effort. Facilitators for providers include those factors discussed in theorganizational context section.Organizational ContextMotivation. We examined potential external and internal motivators for organizations toencourage patient and family engagement in safety and quality. Key external motivators includethe desire to imitate competitors, health care legislation or mandated policies, leadership frominfluential bodies, alignment of financial incentives; public reporting, and accreditation andawards. Key internal motivators included the occurrence of a sentinel event, the business case forpatient and family engagement, the desire to improve quality and safety performance, storiesfrom patients and families, and altruism.Organizational structure. Structural aspects of a hospital that influence the ability to initiate andsustain change include the size of the hospital, profit or academic status, and medical stafforganization. Although there is general recognition of the potential influence of structural factorson an organization’s ability to adopt and sustain innovations, there is insufficient evidence aboutwhether and how these structural factors act specifically as barriers to or facilitators of change.Organizational processes. A number of processes affect an organization’s ability to implementand sustain change. These include: the organization’s understanding of and experience withpatient and family engagement, the existing quality and safety culture, the strength of leadershipat all levels, the hierarchy (whether rules, regulations, and reporting relationships areemphasized), the existence of slack resources (cushion of resources that can be used in adiscretionary manner), absorptive capacity (ability to identify, capture, interpret, share, reframe,and recodify new knowledge to link it with its own knowledge base, and to put it to appropriateuse), and internal alignment (consistency of plans, processes, information, resource decisions,actions, results, and analysis to support and/or change key organizational goals).Implementation strategies. Organizational strategies to foster change within the hospital settinginclude pre-implementation strategies such as conducting an initial assessment of the proposedchange, developing and fostering a shared vision, developing a clear plan for implementation,obtaining buy-in, providing an infrastructure, aligning internal incentives for participation, andconsidering sustainability from the beginning. Strategies during interventions include engagingstaff at all levels, engaging an internal champion, communicating consistently throughout theprocess, using appropriate tools, and collecting data and feedback.Interventions and StrategiesWe found two broad types of strategies or interventions that promoted or facilitated patient andfamily engagement: hospital-level and individual-level strategies. Hospital-level interventionsaare implemented by means of changes in hospital policies, processes, systems, procedures, alsystemsaswellasindividualhospitals.3
structures. Individual-level interventions are designed to change individual knowledge, attitudes,or skills by means of tools for educating, informing, activating, and engaging individuals. Thetwo types of interventions are not mutually exclusive. That is, individual-level tools may supporthospital-level interventions and uptake of new individual behaviors may be facilitated byhospital-level support. With either type of strategy, there was a lack of evidence-basedinformation associated with outcomes.Hospital-level strategies. We grouped the hospital-level strategies into four main categories: Health care team. Interventions and strategies used to engage patients and families asmembers of their health care team include bedside rounds, bedside change of shift reports,patient- or family-activated rapid response teams, specific efforts to encourage familyparticipation, and access to medical record information by patients and family members. Facilitating communication. Procedures and policies to assist patients and family members incommunicating with providers include understanding which staff members are involved inthe patient’s care and strategies to guide clinician-patient encounters. Increasing patient knowledge, skills, or abilities. Hospital-level strategies to increase patientand family engagement include supporting patients and families in care coordination,establishing systems for patients and family members to track medications and health recordspost-discharge, communicating with physicians, and providing access to health information. Input into management and processes. Strategies for involving patients and family membersin management and processes within the hospital include establishing patient and familyadvisory councils, introducing other opportunities for patients and families to be involved,and eliciting patient and family feedback.Individual-level strategies. We reviewed publicly available tools, resources, and relevantliterature. We discuss the tools according to the following components of the Guide: Component 1 (Patient and family active involvement). The majority of tools fell into thiscomponent. The main topics addressed were patient safety, communication with providers,patient engagement and activation, care coordination, and infection prevention. Component 2 (Organizational partnership). Tools were available to help hospitals implementPatient and Family Advisory Councils and provide other opportunities for engagement at thislevel. A smaller number of tools provided guidance for patients and family members aboutassuming these roles. Component 3 (Health care professional). Most of the tools were targeted at clinicians insteadof the broader “health professional” audience. However, the tools did not make distinctionsbetween physicians and nurses. Main topics included communication with patients, infectioncontrol, teamwork and communication training, and provider training on implementationstrategies. Component 4 (Hospital leadership and implementation). Most tools related to thiscomponent focused on steps or tips for hospitals to promote and support organizationalchange and included assessment tools.Format. Across all components, most tools reviewed were paper-based and included brochures,handouts, flyers, posters, checklists, booklets, and handbooks.Implementation guidance. Most of the tools reviewed related to Component 1 (patient andfamily active involvement) and Component 3 (health care professional) but lacked detailed4
supporting guidance for how to implement them. Overall, more guidance and instructions wereavailable for Component 2 (organizational partnership) materials.Usability. Overall, our usability assessment indicated that although several tools provide a strongbase of information to build on, few can be used “as is” without additional testing ormodification.Overall Strength of EvidenceReasonably strong evidence is available from related fields, but existing approaches to andresources and tools for patient and family engagement lack a strong evidence base to supportevidence of efficacy or effectiveness. Because patient and family engagement in quality andsafety is a newer field, we have drawn on fields with stronger evidence (e.g., systematic reviewsof patient-provider communication or shared decisionmaking). Most studies reviewed tended tobe single descriptive studies or case studies. Overall, evaluations of implementations lackedstrong designs. Similarly, in our review of the tools, little information was available on whetherthe tools had been developed with input from the target audiences or whether they had beenevaluated for efficacy, effectiveness, or feasibility.DiscussionIn addition to identifying literature and tools available to support patient and family engagement,the environmental scan sought to identify gaps in subject matter (i.e., content) and in theappropriateness (i.e., usability) of materials for the intended target audiences.Gaps in Content and Topic Areas Content gap 1: Strategies are not attuned to patient and family member experience ofhospitalization. One existing gap is the lack of tools that are based more equally on patientand family perspectives and that focus on the priorities of patients and families duringhospital stays—as opposed to tools that are more reflective of health professional andhospital views and organization of their work.Content gap 2: Lack of individual tools to support hospital-level strategies. Manyhospital-level interventions may not have tools at an individual level (for bothpatients/families and providers) to support their effectiveness.Content gap 3: Lack of concrete, actionable support for individual users to engage inbehaviors. In evaluating the individual-level tools to support patient and family engagementefforts, we found that the tools often lack concrete, actionable support for individual users.We identified general information about patient safety topics, information that patients andfamilies should generally know about the hospital, and many tools for patients and familiesto communicate with their providers, both generally (e.g., questions to ask about prescribedmedications), and specifically (e.g., safety topics like hand washing). However, providinggeneral information or instructing individuals to ask a series of questions in an encounterwith providers does not necessarily provide sufficient support to help individuals take action.Content gap 4: Complementary materials. Hospitals and the health professionals whowork in them will have an enormous impact on the ability of patients and families to engagein issues related to safety and quality. With the exception of infection control, we found fewcomplementary or paired tools that support the Guide’s intended target audiences—patients,family members, and providers—around the same topics and issues. Having complementarymaterials will help facilitate uptake and sustainment of the intervention.5
Content gap 5: Nurse-patient communication materials. Nurses are often on the front lineof quality improvement initiatives, and although physician buy-in will be needed to make theinitiative successful, nurses may be responsible for much of the work. There seems to be adearth of tools specifically for nurses on how to better communicate with patients and viceversa.Gaps in Usability and Appropriateness of ToolsIn cases where the content of the tools was applicable, the usability or appropriateness of thematerials was not adequate. We did not find true turn-key options—those materials that could beincluded in the Guide without additional repackaging, content modification, and testing. Usability gap 1: Lack of key usability criteria. We assessed tools according to a prespecified set of criteria that represented our “ideals” for tools to be included in the Guide.Often, materials had appropriate content but were difficult to read because of problems withplain language, format, or organization of information. Very few tools for patients and familymembers have accompanying information to indicate that the development process includedinput and feedback from the target audience. Without
Contract Final Report Guide to Patient and Family Engagement: Environmental Scan Report Prepared for: Agency for Healthcare Research and Quality Rockville, MD Contract HHSA 290-200-600019 Prepared by: American Institutes for Research Maureen Maurer, MPH Pam Dardess, MPH Kristin L. Carman, PhD Karen Frazier, MA Lauren Smeeding
Patient and Family Centred Care (or person/people centred care) is the philosophy of care, Patient Engagement is an approach to Patient and Family Centred Care and Patient Experience is an outcome. Patient engagement is the act of involving the patient and their family in decision-making, design, planning,
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