Methods (continued, 3)

Strategies and Interventions

In conducting this environmental scan, we sought to identify strategies and interventions that have been used to engage patients and families in their care and at an organizational level with regard to safety and quality. Overall, we found two broad types of strategies or interventions that promoted or facilitated patient and family engagement:

Hospital-level interventions^d that are implemented by means of changes in hospital policies, processes, systems, procedures, or structures.
Individual-level interventions that are implemented to change individual knowledge, attitudes, or skills by means of tools for educating, informing, activating, and engaging individuals.

The two types of interventions are not mutually exclusive. That is, hospital-level interventions may be supported by individual-level tools, and uptake of new individual behaviors may be facilitated by hospital-level support.

Next, we discuss the types of hospital-level and individual-level interventions identified in the scan, addressing what strategies have been used, who is involved, and what outcomes have been assessed.

Exhibit 8 highlights the strength of evidence for articles reviewed in this section. Most evidence in this section is from case studies or empirical articles about interventions, strategies, or tools used in a single hospital. In general, these articles did not discuss sustainability of the interventions.

Hospital-level strategies

We grouped the hospital-level strategies into four main categories:

Engaging patients and families as members of their care team.
Facilitating communication among patients, family members, and the care team.
Supporting increases in patient or family member knowledge, skills, or abilities.
Involving patients and families at a hospital level.

At the outset, it is important to note that some of the strategies and interventions described here fall short of truly engaging patients and families in safety and quality issues. As noted in our discussion of the characteristics of the target audiences, information by itself is typically insufficient to motivate true behavior change. In our discussions, we note where the intervention serves as a first step (such as providing information) but may need to be accompanied by additional materials or strategies to help individuals take action.

Engaging Patients and Families as Members of Their Care Team

Interventions and strategies used to engage patients and families as members of their health care team include bedside rounds, bedside change of shift reports, patient/family-activated rapid response teams, access of medical record information by patients and family members, and other specific efforts to encourage family participation. Exhibit 9 briefly summarizes these interventions along with outcomes that have been measured for each strategy.

Bedside rounds. Bedside rounding is one strategy used in both pediatric and adult hospitals to facilitate patient and family participation as part of the health care team. Bedside rounds include, at a minimum, the attending physician and patient or family member, but can also include multi-disciplinary team members such as nursing staff, social workers, pharmacists, resident physicians, and others as needed. In some cases, patients and family members are given the choice about whether to participate in rounds. However, studies have noted that when given the choice, almost all patients and family members choose to participate. ^107,170,178

There is evidence to support the idea that bedside rounding facilitates patient and family engagement. For example, studies suggest that bedside rounds facilitate not only patient and family involvement in treatment decisions but also clarification of orders and discharge instructions.^{2,3,52,107,166-171,179} Moreover, one observational study reported that family members' participation in rounds resulted in the discovery of new information 46 percent of the time.⁵² Several studies also noted improved patient satisfaction^{2,3,166,170,171} and improved staff satisfaction^2,3 after the implementation of bedside rounds. Finally, one study noted that the length of stay decreased after implementation.¹⁶⁶ In the pediatric realm, the Committee on Hospital Care of the American Academy of Pediatrics (AAP) issued a policy statement in 2003 that attending physician rounds in patient rooms with families present should be standard practice.³

A commonly lodged criticism of bedside rounds is that they require extra time on the part of the care team. However, the available evidence on this issue is conflicting. Although one study found that family-centered rounds take 20 percent longer,¹⁷⁰ another noted that family member presence during rounds added only one minute to the process.⁵²

Bedside shift reports. Conducting bedside change of shift reports is another strategy used to encourage patient and family involvement as part of the health care team. Conducting change of shift reports at the bedside, instead of at the nurses' station or in the hallway, allows family members to participate more fully,^172-174 facilitates the sharing of information, and also allows outgoing staff to introduce incoming staff to patients and family member.¹⁷³ Strategies for conducting bedside shift reports include issuing nurses a pocket guide to ensure that all issues are covered during the report, such as identifying patient priorities and team priorities.¹⁷² Other strategies include having staff encourage patients to ask questions and using appropriate language so that patients do not feel "talked over."¹⁷³

Hospitals that have implemented bedside change of shift reports have seen positive effects on nursing staff and physician satisfaction, as well as decreases in staff time.^172-174 One study noted a decrease in time over shift by 100 hours in the first two pay periods.¹⁷² Nurses also have reported better ability to prioritize work/cases during their shift and a positive impact on patient outcomes through improved discharge planning.¹⁷³

Patient family-activated rapid response teams. Rapid Response Teams (RRTs) address situations of acute deterioration of a patient while under hospital care. RRTs bring critical care expertise to the bedside (or wherever care is needed) to address the effects of early warning signs of health trauma affecting a patient. Teams typically comprise a wide array of health care professionals from various departments.

The Condition H (Condition Help) program at the University of Pittsburgh Medical Center (UPMC) provides an example of how RRTs have been implemented to encourage patient and family engagement. The Condition H program allows patients or family members to activate RRTs.^175,176 Patients or family members are encouraged to use an internal telephone line if there is a noticeable change in a patient's condition and the health care team is not responsive to the change or to patient and family concerns. All patients and families receive the telephone number and information about Condition H upon admission, and the admitting nurse reviews this information. The Condition H team is led by an administrative nursing coordinator and includes a physician, unit nursing staff, and a patient relations coordinator. Similar RRT programs have been implemented in other hospitals, and they may have different types of staff and processes associated with them.¹⁷⁵

Within 9 months of implementing Condition H at UPMC, there were 21 Condition H calls.¹⁷⁶ Interviews with the patients and family members who initiated these calls generated positive responses to the program. Specifically, patients reported feeling safe, respected, and empowered. One concern associated with the implementation of Condition H is that patients or family members will activate the RRT for noncritical "complaints." However, UMPC found that the majority of Condition H calls met the criteria established for emergency needs and that the impetus for most calls was related to communication issues between patients and clinicians.¹⁷⁶

Efforts to increase family participation. Hospitals also may implement other specific efforts to increase family participation during the hospital stay. Efforts include changes in organizational policies to allow open visitation or family presence during invasive procedures; provider and patient reactions to these policies were discussed in more detail in the findings about individual characteristics of the target audiences.^57,158 Another study described a VIP program in which patients designate a family member or friend as a VIP who participates as part of the health care team. VIPs share patient "likes" and "dislikes" with health care workers and participate in direct patient care to better assist the patient upon discharge. For their part, providers cannot argue with VIP perceptions of care and are responsible for determining how best to resolve the situation when there are different perceptions between the VIP and health care workers.¹⁷⁷

Access to medical records by patients and families. Several hospitals have implemented strategies to allow patients and families to access medical records or online portals for information.^e For example, The Children's Hospital of Philadelphia provides patients with online access to shared care plans, allowing patients to collect information about providers and medicines in one place that they can share with their physicians. As another example, Planetree hospitals have an open chart policy that allows patients to read and write in their medical records.¹⁶⁹ The literature reviewed did not provide information about the effects or reactions to these types of programs.

Facilitating Communication Among Patients, Family Members, and the Care Team

The second main group of hospital-level strategies to increase patient and family engagement involves the implementation of procedures and policies to assist patients and family members in understanding which staff members are involved in the patient's care or facilitating communication between patients and providers. Exhibit 10 briefly summarizes these interventions along with outcomes that have been measured for each strategy.

Understanding which staff members are involved in patients' care. As noted in the section on individual characteristics, patients and family members may find it difficult and intimidating to understand the unfamiliar environment of the hospital and who in the hospital is providing care. As one member of this project's Steering Group noted, each hospital is like a continent, with each hospital unit like a country. Each unit has its own culture, language, and traditions, and it is difficult for an outsider (the patient) to understand this environment without some introduction or education. Although the interventions noted in this section can help inform patients about the staff providing care, this may not lead to true engagement and communication with providers without additional support.

One strategy involves the use of whiteboards in each patient's room to convey and share information among patients, family members, and members of the care team. In one study, nursing staff used whiteboards in each patient's room to help patients and family members identify who did what among nursing staff, including names, roles, and education level. Family members used whiteboards to enter their own phone numbers and leave messages for nursing staff about the patient's needs. Post-implementation evaluation results demonstrated positive increases in patients' ratings of nurses' promptness in responding to call light requests, making periodic checks without a request, and the positive manner of nursing care provided. The authors hypothesized that prominently posting staff names may have increased staff members' sense of accountability, leading to these changes in nursing behaviors.¹⁸⁰

Other strategies include providing written materials or posting information for patients and family members about staff names, telephone numbers, and other information about the hospital (such as visiting times, meal times, round times). For example, one hospital developed a "deck" of staff name cards, bound with binder rings, that was hung in the patient's room.¹⁸¹ Another hospital developed a business card to give to patients and relatives with information about the patient's location.¹⁸² Articles about these interventions did not report outcomes.

Facilitating communication with physicians. A systematic review of randomized controlled trials conducted by Rao and colleagues¹⁸³ examined interventions to enhance the communication behaviors of physicians and patients, rating the intensity of the intervention (e.g., number of times delivered, additional personnel required) and examining associated outcomes. Of the 36 studies reviewed, 18 studies targeted physicians, 15 targeted patients, and 3 targeted both physicians and patients.

Overall, the review found that the interventions improved physician communication behaviors on patient ratings of their communication style and demonstration of patient-centered communication behaviors (e.g., asking open-ended questions). Patient interventions showed similar effects; interventions increased information obtained per question and involvement in the visit.¹⁸³

Intensity of the intervention had a clear relationship to improvements in physician behaviors. Almost all interventions targeting physicians were rated as moderately or highly intense. Three-quarters (76 percent) of the interventions included three or four intervention types (e.g., information, modeling, feedback, practice), and nearly all (95 percent) required additional personnel. The relationship between intensity and improvements was less clear for patients. However, interventions targeting patients were mostly low intensity. A third included one intervention type, and less than half (44 percent) involved additional staff to implement the intervention.¹⁸³

We looked at two studies that evaluated the impact of coaching—either by a consultation planner or a clinic assistant—on the patient's ability to ask questions or raise concerns during pre- or post-hospitalization visits with physicians. The coaching usually used a structured protocol to help patients generate their questions and concerns about the upcoming meeting with their physicians.^184,185 In one study, patients attended a 20-minute session before a regular office visit, during which a clinic assistant reviewed their most recent record and helped them identify relevant medical decisions in their care and questions for their physician.¹⁸⁵ Although patients in the experimental and control groups asked similar numbers of questions during the physician visits, patients in the experimental group were more likely to control the flow of the conversation by using alternative strategies such as joking about uncertainty or introducing topics attributed to others (such as "my friend had this treatment...").¹⁸⁵ Despite initial poorer health, patients in the experimental group reported better role and physical functioning after the intervention than did patients in the control group, indicating a positive impact on patients' health outcomes.¹⁸⁵ In the other study, a pre-hospitalization intervention, a consultation planner (employee, volunteer, nurse, or non-nurse) used a structured interview to help patients generate questions and concerns for an upcoming meeting with their physician.¹⁸⁴ In an evaluation of the intervention's impact on patient satisfaction, 60 percent of patients reported maximum satisfaction with how the intervention helped them prepare for the medical visit.¹⁸⁴ Satisfaction was not correlated with whether the planner was an employee or a volunteer, or a nurse or a non-nurse. Although this intervention was effective in increasing satisfaction, the evaluation focused only on this outcome. Therefore, it is unclear whether the session with the consultation planner was similarly effective in increasing the patient's ability to ask questions or get the information needed during the visit.

Using shared care plans and daily goal plans/sheets. Another strategy designed to facilitate communication with care providers is the use of shared care plans or daily goal/care plans. The shared care plan was developed largely as a self-management tool to help individuals keep track of their health, including managing chronic conditions.¹⁸⁷ Some hospitals are now implementing the systemic use of shared care plans to improve communication among all members of the care team. For example, St. Joseph's Hospital (Washington) has implemented a program where electronic shared care plans are used to ensure that all care team members (including family members) share up-to-date, accurate, and complete information. The shared care plan also helps create a platform by which patients, family members, and providers can work together to identify problems, priorities, treatment plans, and goals. At St. Joseph's, the electronic shared care plans are linked to patients' online medical records so that information from the medical records is automatically imported.¹⁸⁶ Patients, family members, and clinicians all share the same ability to access and write in the shared care plan, which contains information on personal and family health history, medications, allergies, health indicators such as cholesterol and blood pressure, personal health goals, and the patient's preferences (e.g., religious and dietary preferences). The literature review did not find outcomes assessed with the use of a shared care plan as a strategy for engaging patients and family members in quality and safety.

A similar strategy is the use of daily care/goal plans and sheets. The daily care plan is a patient information sheet that lists allergies, current medications, and any tests and procedures scheduled for the day. The daily care plans are given to patients and families each day to help providers communicate with patients and families about plans for care. However, the extent to which patients and family members are allowed to be involved in the creation of these daily care plans is unclear.

Supporting Increases in Patient Knowledge, Skills, and Abilities

The third main group of hospital-level strategies to increase patient and family engagement includes interventions that involve structural changes to support increases in patient knowledge, skills, or abilities. This includes implementing structural changes to engage and support patients and families in care coordination, establishing systems for patients and family members to track medications and health records after discharge, providing support for asking questions or raising concerns during communication with physicians, and providing access to general health information. Exhibit 11 briefly summarizes these interventions along with the outcomes that have been measured for each strategy.

Engaging and supporting patients and families in transition planning. After discharge, one in five hospital patients will experience an adverse event (with adverse drug events being the most common).^87,197-199 These adverse events lead to emergency department visits or hospital readmission; often, readmissions result from a lack of continuity of care at discharge.^200-201 Several of the articles we reviewed discussed hospital-level strategies to support patients' and family members' transition from admission to post-discharge^{32,188-192,202} and specifically noted the need for patients' and family members' engagement in discharge planning throughout the hospital stay.^32,194,203 In general, many discharge and transition interventions reflect hospital processes and procedures without accompanying strategies to increase patient or family member knowledge and skills related to engaging in the health care encounter.

Most of the discharge strategies involved establishing procedures or systems to ensure that a designated person engages patients in their care from admission to post-discharge. Depending on the study or intervention, this person was called a discharge planner,¹⁹³ transition coach,^190,203 or patient navigator.¹⁸⁹ Most often, the care coordinator was a nurse or nurse practitioner, but it also could be another staff person or a patient or family member volunteer. In the studies reviewed, care coordinators were responsible for the following:

Making sure that patients and family members were involved in discharge planning and assessing patients' understanding of discharge instructions.^32,194,203
Ensuring that followup appointments with ambulatory care physicians were made before discharge, at a time convenient to the patients/family members.^32,192,203
Ensuring that hospital records or discharge summaries were sent to the ambulatory care physicians before the followup appointment^32,203 or that patients or family members took these records to the appointment.^32,190,191
Making post-discharge phone calls and/or home visits to assess discharge issues and any patient or family member concerns.^32,192
Helping patients reconcile pre- and post-hospitalization medications.^32,190
Providing coaching to patients and family members to prepare questions or concerns to ask physicians during followup visits.¹⁹⁰

Evaluations have shown that care coordinators typically spent from 1 to 2½ hours per discharge,^32,194 and that they are effective in increasing patient satisfaction with the discharge process.^193,194 In one evaluation, hospitalized patients who received a patient-centered intervention designed to encourage patients to take a more active role in managing the transition from hospital to community were half as likely to be readmitted to hospitals as those who did not receive the intervention. The intervention included a transition coach (nurse practitioner) who helped patients reconcile medications and prepare for post-hospitalization physician visits as well as identify "red flags" of worsening condition through a series of telephone and home visits.¹⁹⁰

In a guide for hospital leaders on how to reduce preventable hospital readmissions, Osei-Anto and colleagues discussed several hospital-level strategies that hospitals could implement.²⁰⁴ Although most of these strategies are not focused on patient and family engagement, elements of the strategies encourage patient and family involvement.¹³⁹ One strategy, the Re-Engineered Discharge (RED) program, has been adopted by the National Quality Forum as one of its "Safe Practices." This hospital-level program uses an After Hospital Care Plan (AHCP) for patients, which is generated electronically by providers at a dedicated workstation. The AHCP is a spiral-bound, color booklet with information needed by patients for the days between discharge and their first visit with their ambulatory care physician.³² Although adverse event data are still being assessed from a randomized controlled trial in a single hospital, intervention group participants had a significantly lower rate of emergency department visits and hospitalizations within 30 days of discharge.²⁰⁵

Establishing systems for patients and family members to track medications and health records. Another structural change to support increases in patients' and family members' knowledge, skills, and abilities is the establishment of mechanisms for patients and family members to track medications and health records post-discharge. For example, some hospitals provide patients with a post-discharge personalized medication list¹⁹⁵ or forms for patients to maintain their own medication lists.¹⁹² Similarly, the shared care or daily plans discussed above can be updated to reflect the most recent hospitalization and communicate a shared understanding of post-discharge plans. This plan can help patients plan for discharge and facilitate their continued involvement in their own care management.

Other strategies include providing forms or patient-held medical records with information about procedures, test results, and other clinical data that can be taken by the patient or family member to the followup appointment.^190,191 Because these tools are designed for use on an individual basis (and may benefit from, but not require, hospital-level implementation), we discuss these tools in more detail below, in the section on individual-level strategies, topics of Component 1.

Another strategy to help patients track their own health information is the establishment of procedures to help patients and families do their own medication reconciliation. For example, one ambulatory care center implemented a program in which clinic assistants printed copies of patients' medical records and asked the patients to update their own records while waiting for their visits. This intervention resulted in a 400 percent increase in the number of medication lists reconciled, with specific changes including deleting medications no longer used, adding medications that were not previously on the list, and correcting dose or frequency errors.¹⁹⁶

Accessing health education materials. Hospitals also have the opportunity to provide patients and families with access to health education materials or information. Examples of these strategies include establishing an information resource center for patients and families within the hospital or providing access to education videos through the hospital's television system.¹⁸² Our literature search uncovered scant research on the outcomes or effectiveness of these strategies. Although providing information about conditions or treatments is a first step in engagement, other supports would need to be in place to help patients and family members use the information to communicate with providers.

Involving Patients and Family Members at the Hospital Level

Next, we describe the fourth and final main group of hospital-level strategies to increase patient and family engagement: strategies for involving patients and family members at an organizational level. These strategies include establishing patient and family advisory councils, introducing other opportunities for patients and families to be involved, and eliciting patient and family feedback. In this section, we discuss the creation of these opportunities at a hospital level; in our discussion of Component 2 individual-level strategies, we will focus on strategies to help patients become involved once the opportunities exist. Exhibit 12 briefly summarizes these interventions along with outcomes that have been measured for each strategy.

In a summary for the Institute for Healthcare Improvement,²⁰⁶ Reinertsen and colleagues described how involving patients and family members at an organizational level is an example of a small change that can bring about big results in performance.

We have observed that in a growing number of instances where truly stunning levels of improvement have been achieved, organizations have asked patients and families to be directly involved in the process. And those organizations' leaders often cite this change—putting patients in a position of real power and influence, using their wisdom and experience to redesign and improve care systems—as being the single most powerful transformational change in their history. Clearly, this is a leverage point where a small change can make a huge difference.²⁰⁶

Establishing patient and family advisory councils. Establishing patient and family advisory councils (PFACs) is one mechanism for ensuring the participation of patients and family members at a broader organization level.^{107,131,169,207-216} PFACs enable patients and family members to partner with hospitals to make key organizational decisions²⁰⁷ and to participate in safety policies, facility planning,²¹³ organizational assessments,²¹² training and education of hospital staff,²¹² development of materials, and hiring of new staff or management.²¹⁵ The presence of PFACs also benefits hospital staff and administration by enabling them to learn about quality and safety from the perspectives of patients and family members.²⁰⁷

Although many benefits of PFACs have been cited, most of the available evidence to support these benefits comes from descriptive case studies of organizations that have implemented PFACs. For example, at John Nasseff Heart Hospital in St. Paul, Minnesota, perceived benefits associated with the implementation of the PFAC included enhancing the ability of nurses to better understand and meet patients' and family members' needs and subsequently improving satisfaction among patients, families, and staff; providing a sounding board for staff to use when designing or planning initiatives, allowing more efficient use of redesign resources; improving the public image of the hospital; and enhancing hospital reputation and market share.²¹² The Medical College of Georgia (MCG) Health System experienced a steady drop in lawsuits over a 5-year period, along with improvements in cost efficiency, which MCG attributed in part to efforts to partner more closely with patients and family members at an organizational partnership level.²¹³ Also, case study descriptions have indicated that PFACs help to develop or improve patient information materials and may facilitate earlier detection of potential problems in quality and safety (i.e., before an adverse event).²⁰⁸

It is important to note that hospitals may adopt different models for the use of PFACs. At some institutions, PFACs have the authority to participate in the decisionmaking process, which reflects a higher level of patient engagement. At others, the PFAC has the authority to collect information, provide input and feedback, and make recommendations to leadership. However, the authority to make decisions remains in the control of leadership.²¹²

In general, the materials we reviewed demonstrated that there is relatively strong guidance available on the process for establishing PFACs. Broadly speaking, the steps to form a PFAC include defining the purpose of the council, allocating resources, identifying and recruiting members, and providing training.²¹⁹ Membership should reflect the ethnic diversity of patient populations, and members should participate in an orientation or training that addresses HIPAA, confidentiality, working with professionals, team building, and quality improvement. PFACs may also accommodate family schedules and reimburse out-of-pocket expenses such as travel and child care.¹⁰⁷

Examples of a small selection of PFACs, including who is involved and their roles and responsibilities, are highlighted in Exhibit 13. We also discuss PFACs further in our review of tools for Component 2, focusing there on individual-level information to support patients' and family members' involvement in PFACs.

Introducing other opportunities for patient and family involvement at a hospital level. In addition to PFACs, hospitals can provide other opportunities for patients and family members to participate at an organizational level. Potential ways for patients and family members to contribute their expertise include serving as "faculty" for hospital staff orientation, participating in staff training, and helping train and educate medical or nursing students.^{107,169,213,215} Patients and family members also may participate on such committees as patient safety, patient and family education, or customer service and satisfaction.^169,217 Patients and family members may also participate in safety rounds or "on the spot" satisfaction surveys, where patient volunteers can interview other patients and families about their concerns.^169,215 Although the literature reviewed did not identify specific outcomes associated with these strategies, several of our key informant interview (KII) participants noted that there is a general perception that these are effective ways for the hospital and providers to understand the patient's perspective and incorporate it into their daily practice.

Eliciting patient and family member feedback. Eliciting feedback from patients and families is another hospital-level strategy to ensure that patient perspectives are incorporated into hospital policy and procedures. As noted in our discussion of organizational context above, patient satisfaction surveys such as HCAHPS can be important motivators for change at an organizational level and can also provide the opportunity for patients and family members to contribute feedback at the organizational level. Likewise, conducting patient and family focus groups can highlight important areas for improvement or change related to quality or safety.^167,218

Individual-Level Strategies and Tools

As described earlier, individual-level interventions target changes in individuals' (patients, families, providers, leadership) knowledge, attitudes, or skills. Here, we present findings on individual-level interventions as they relate to each of the Guide components in terms of the topics covered, modes of distribution, overall usability issues of the tools, and implementation guidance provided.

The information in this section draws mainly on our review of publicly available tools and resources for educating individuals on the concepts of patient and family engagement in quality and safety. Occasionally and where noted, this information is supplemented by findings from our review of relevant literature.

Topics Covered

In this section, we discuss individual-level tools, grouped according to Guide components:

Component 1: Patient and family "active involvement" tools provide information, encouragement, and support for patients and families to become actively involved in their hospital care as key members of the health care team.
Component 2: Patient and family "organizational partnership" tools provide patients and families with information to prepare them for partnering with organizational leaders, opinion leaders, and other consumer and patient advocates to improve the safety and quality of hospital care at a systems level.
Component 3: Health professional tools provide health professionals with information and strategies to prepare them for partnering with patients and families to improve health care safety and quality at two levels—in direct care and in policy and program development, quality improvement, and health care redesign.
Component 4: Leadership and implementation tools provide systemic support to administrative leaders, departmental managers, opinion leaders in hospital cultures, and hospital staff members who will be responsible for implementing the Guide.

The main topics of the tools classified in each component are shown in Exhibit 14.^f Because the format of available tools was consistent across all components, we discuss format in a separate section below.

Component 1: Patient and family active involvement. The majority of tools reviewed (136 of 213) related to Component 1 of the Guide. These tools focus on engaging patients in their individual care experiences and emphasize safety and quality issues. The main topics addressed were patient safety, communication with providers, patient engagement/activation, care coordination, and infection prevention. Each of these topics is discussed separately below.

In terms of the intended audience, the majority of the tools targeted patients as a discrete audience, rather than targeting patients and family members or family members only. However, a few tools were directed at caregivers or parents, and in many cases, the information in the patient-only tools could be applicable or useful to family members as well.

Safety. About one-third of the tools reviewed provided general education or specific information to patients about issues related to health care safety.

Some tools provided general information on patient safety specific to a particular topic (e.g., medications) or a particular setting (e.g., hospitals). These tools included high-level information discussed in more detail in other tools (e.g., speaking up, medication safety, preventing falls, communicating with providers, clean hands).

One frequently addressed topic was medication safety. Tools on medication safety focused on questions to ask providers about medications across settings (i.e., not just in the hospital but also in ambulatory care and pharmacy settings), how to take medications safely (e.g., follow dose and timing instructions, take the full course as prescribed, alert providers to any reactions), and tips for preventing errors (e.g., check to ensure the medication is the one you expected to have prescribed).

The information gathered from our review of the medication safety tools was complemented by several peer-reviewed articles that discussed techniques for educating patients about medication errors or methods for reconciling medication lists.^{192,195,196,221,222} For example, in one randomized controlled trial (RCT), patients received a copy of their current medication list and an updated list every 3 days (experimental group only), as well as a one-page consumer education guide to medication safety (experimental and control group). There were no significant differences between the experimental and control groups in the rates of adverse drug events, close calls, or self-reported experience of care. In a post-implementation survey of nurses working with these patients, 29 percent reported that at least one medication error was prevented because a patient or a family member identified a drug-related problem.²²²

Another safety topic addressed by the tools was how to ensure safety when entering the hospital for surgical procedures. Tools of this type provided guidance related to surgical safety and focused mostly on marking surgical sites. However, one evaluation of an intervention to encourage surgical site markings suggests that this type of seemingly simple intervention may not be as effective as anticipated. In this study, DiGiovanni and colleagues found that after receiving a preoperative instruction sheet on which extremity needed surgery, 59 percent of patients were fully and 4 percent were partially compliant with instructions, but 37 percent made no mark.²²³ As discussed in the earlier section on individual characteristics of the target audience, surgical site marking may feel to patients as though they are challenging their surgeon's expertise or authority, meaning it may be a more difficult behavior for them to adopt.

Overall, few of the tools related to patient safety provided information for patients on what providers and hospitals are doing to ensure safety. In one review of five major campaigns encouraging patients to engage in patient safety behaviors, the authors found that all campaigns emphasized steps patients could take to ensure their own safety, but none specified current standards or what providers were doing or could be doing to ensure safety. The reviewers of these campaigns expressed concern that the communications suggested a shifting of responsibility for safety from professionals to patients, as opposed to portraying safety as an issue in which both patients and providers play a role.²²⁴

Communicating with providers. A second major category of the tools related to Component 1 dealt with communicating with providers. The broad purpose of these tools (~30) was to facilitate successful interactions with providers. The tools tended to focus on helping patients obtain information from providers by providing guidance about questions to ask, mostly related to specific procedures (e.g., before surgery, after diagnosis) or topics (e.g., pain management). In short, these tools tended to address highly specific communication situations instead of providing patients with broader guidance about how to engage in successful interactions or encounters with their providers. The tools also provided virtually no guidance about how to engage in difficult conversations with providers or how to feel comfortable initiating conversations with providers—behaviors that often can be difficult for patients.^67,225

Be an active patient/be involved. The third category of tools related to Component 1 provided general guidance to patients about the need to speak up, understand, and be active in their own health care. For example, the widely known National Patient Safety Foundation's "Ask Me 3" and Joint Commission's "Speak Up" materials both address these topics, encouraging patients to ask questions and seek information, arguing that developing a greater understanding of one's own health care leads to empowerment and better health outcomes. Tools in this category also often included information about patient roles and rights or explained what patients had a right to expect during their hospital stay.

As described earlier in the findings on individual characteristics, many factors affect patients' willingness and ability to become active participants in their own health care. Three articles that we reviewed evaluated specific interventions or strategies designed to promote patient involvement and participation.^226-229 Overall, the strategies discussed seemed to improve patient self-efficacy but did not seem to have a significant effect on actual behaviors. For example, in one randomized controlled trial, patients were assigned to one of five intervention groups (written encouragement to ask questions, question identification, question identification and rehearsal, or two control groups). Although the interventions increased the patient's self-efficacy related to asking questions, there was no difference in the numbers of questions asked between intervention and control groups. There also were no notable differences among the intervention groups in terms of self-efficacy or question asking.²²⁶ Similarly, Weingart and colleagues²²⁸ conducted an evaluation of an awareness campaign that trained patients and family members to use teamwork techniques to partner more effectively with health care providers. In addition to print materials and lobby displays, volunteer "rounders" gauged the interest of patients and then provided supporting written materials and used role-playing techniques to model an assertive but respectful way that patients can ask seemingly confrontational questions of providers. Although patients endorsed the impact of the campaign on their behavior, the evaluation did not show a change in patients' teamwork attitudes or experiences.²²⁸ In another evaluation, the use of a tool to determine patient preferences for involvement and decisionmaking was perceived by doctors and patients as valuable for initiating dialogue; however, further research was needed to determine its impact on patient satisfaction and other outcomes.²²⁷ Finally, in an uncontrolled evaluation of a program designed to enhance the involvement of older patients in their care, primary care physicians were invited to attend a 2-hour workshop or receive a 30-minute practice visit where they were instructed on how to use a leaflet distributed to patients and motivated to involve the patient. Patient involvement and satisfaction did not improve as a result, but half of patients and two-thirds of physicians found the intervention useful.²²⁹

Care coordination. Other tools related to Component 1 that we reviewed focused on aspects of coordination of care, either by helping patients keep track of health information (e.g., through health history logs or medication tracking tools) or by providing support for discharge planning (e.g., understanding discharge instructions).

Above, we discussed organizational procedures to help patients and family members keep track of health information such as hospital-level policies that involved printing out records or medication lists for patients. In our review of tools, we also found several individual-level tools for patients and families to track this health information, including health history logs and tools to organize and track medications. Although these tools seemed to be encouraged in the literature,^192,221 there has been little research on their effectiveness.

Likewise, in the previous section on hospital-level procedures, we also discussed hospital-level strategies for coordination of care from admission to discharge. Several individual-level tools have been designed for patients to support hospital admission and discharge planning. These mostly included checklists or lists of questions to ask before admission or discharge.

Infection prevention. A smaller number of materials, mostly from the Veteran's Health Administration, focused on encouraging patients to ask providers whether they have washed their hands. Literature shows variable results associated with these types of evaluations. For example, the "Partners in Care" intervention provides patients with brochures and supportive materials to encourage providers to wash their hands; evaluations of this program are included in three studies with slightly different designs and settings. The results indicate a wide range, anywhere from 38 percent to 79 percent, of patients who after receiving the intervention materials actually asked staff whether they had washed their hands.²³⁰

Component 2: Patient and family organizational partnership. In the previous section (hospital-level strategies), we discussed the creation of Patient and Family Advisory Councils (PFACs) or the development of other opportunities for patients and family members as hospital-level strategies to facilitate patient and family engagement. Clearly, these structural mechanisms need to be in place before individual-level information and guidance can be provided to patients and family members about what organizational partnership roles are available to them and how they can become involved. However, even when these opportunities exist, patients and family members need support and information about the benefits of becoming involved and what will be required of them.

In general, we reviewed fewer tools related to Component 2 than Component 1 (19 of 213). Most of the more comprehensive tools were targeted mainly toward hospitals and provided guidance about how to establish PFACs or other opportunities, as discussed above. We reviewed a small number of tools related to Component 2 that provided direct guidance for patients and family members about assuming roles as PFAC members, patient experience advisors (on committees, teams), or family advisors. In general, the majority of available tools do not provide support or specific instructions for people who may be more tentative about how to participate at an organizational level. With the exception of a guide developed by the Institute for Family-Centered Care (IFCC), the majority of these tools were hospital-specific and in the form of letters, application forms, or other correspondence to patients and families about the programs, roles, and responsibilities.

Component 3: Health professionals. Health professional tools accounted for 31 of 213 tools reviewed. Most of the tools were targeted to clinicians (physicians and nurses) instead of to the broader "health professional" audience. However, the tools did not make any distinctions between clinicians.

Communicating with patients. In general, few tools for health professionals focused specifically on facilitating increased patient and family engagement. Reviewing tools to support shared decisionmaking or facilitate patient-provider communication for specific treatments was not within the scope of this study; however, we summarize relevant findings to support patient engagement in the findings section on individual characteristics of the target audiences. The materials we did review focused mostly on engaging patients through improved communication, which included providing clinicians with information about the effects of poor patient-provider communication and low health literacy and outlining specific techniques to guide the patient encounter or ensure patient understanding (e.g., assessing patients' understanding of discharge instructions through the "Teach-Back" method).²⁰³ Many of the tools in this arena seemed to discuss the need to improve communication as a way to correct inherent "deficiencies" in patients (e.g., low literacy, low health literacy) rather than as a way to encourage patients as partners.

As noted in the section on facilitating provider communication under hospital-level strategies, Rao and colleagues found that intense efforts appear to be necessary to change physicians' communication behaviors (i.e., intervention delivered multiple times in multiple modes and requiring the involvement of personnel in the delivery).¹⁸³

The literature describes several tips for effective communication with patients, such as speaking simply, directly, and slowly using plain English;^79,231,232 providing specific information and detailed instructions and only a few pieces of new information at a time;^231,233,234 repeating information;^79,231,232 and using active listening and "teach-back" techniques.

The literature also describes techniques for allowing patients to contribute to the interaction, such as allowing patients to tell their story without being interrupted^78,79; creating an environment where patients are comfortable asking questions; and asking open-ended questions and prompting for full answers.^79,231,234 In addition, the literature describes the importance of affirming the patient by showing empathy, legitimizing the patient's feelings, and affirming the patient's efforts.⁷⁹ Moreover, a literature review found that physicians who were able to judge a patient's nonverbal behavior tended to have more satisfied patients and that a physician's nonverbal behavior can improve a patient's functioning.^235,236

Infection control. In only one area—hand cleanliness—did we find materials designed to educate both patients and providers about the same topic. For Component 3, we reviewed hand cleanliness tools from the Veteran's Health Administration that promoted hand cleaning practices among providers and that were designed to complement Component 1 tools encouraging patients to ask providers about hand cleanliness. Specifically, the tools for providers (in the form of flyers) prepared them for patients asking whether providers have washed their hands and encouraged health care professionals to respond appropriately.

Partnering with patients at an organizational level. In looking for Component 3 materials, one of our original goals was to find materials designed to assist health professionals in partnering with patients—both in their direct care and at an organizational level in policy and program development or quality improvement activities. Although one article on a PFAC noted that they selected providers to work with patients and family members at an organizational level who could assess a situation from multiple perspectives and who would value patients' perspectives,²⁰⁷ our review did not uncover tools to help health professionals partner with patients at an organizational level. Instead, the materials we found centered almost exclusively on direct care. The Component 2 materials on organizational partnership provided guidance for health leaders or patients, but were not necessarily targeted directly at front-line professionals.

Team work and communication with other providers. We also reviewed tools and strategies that focused on improving communication and teamwork between health care providers (e.g., TeamSTEPPS™, Situation-Background-Assessment-Recommendation).²³⁷ Although these tools neither specifically addressed patient and family engagement nor included techniques for communicating with patients, we felt that lessons learned could potentially be extrapolated to patient-provider communications. For example, hospitals have made efforts to improve handoffs using standardized communication exchanges.²³⁸

The Situation-Background-Assessment-Recommendation (SBAR) is a mnemonic device that provides a framework for communication between members of the health care team about a patient's condition. Studies on SBAR have shown positive outcomes in perceived effectiveness of communications by providers on a pre- and post-survey,²³⁹ increases in employee satisfaction,^127,240 decreases in nursing turnover,¹²⁷ and reductions in adverse events.²⁴¹ However, in a literature review of handoff mnemonics, Riesenberg and colleagues concluded that the literature on handoff mnemonics identified is not of sufficient quality and quantity to synthesize into evidence-based recommendations.²⁴²

TeamSTEPPS™ is a teamwork system developed by the Department of Defense and AHRQ to improve quality and safety through better collaboration and communication within institutions.^g TeamSTEPPS™ has been shown to have a substantial impact on patient safety culture, teamwork, and communication.²⁴³ Although suggestions have been made to expand the definition of the care team in TeamSTEPPS™ to include the patient and family,²⁴⁴ no efforts have been made to operationalize these recommendations.

TeamSTEPPS and SBAR are just two examples of techniques designed to standardize and improve communication among providers. As yet, few efforts have built on these tools to expand them to patients and families.

Provider training. Only a few articles reviewed discussed the training involved for providers in supporting the use of tools, including:

Developing a video that highlights different scenarios that staff might encounter and provides tips for how to resolve difficult situations.¹⁵⁸
Training physicians in a 2-hour workshop or a 30-minute practice session on motivating them to involve patients.²²⁹
Training nurses using mnemonic devices to remember key actions to support patient engagement (e.g., KIDS CARE program: Knock, Introduce, Determine, Safety, Clean hands, Advocate, Respond, Explain).²²⁰
Using a prompt sheet/script that requires minimal training and no technical assistance.¹⁸⁴
Employing train-the-trainer models, including developing a handbook for participants and trainers. In one example, adult learning methods employed included interactive lectures, small-group learning, and role play.²⁴⁵

Also, several program descriptions noted that patient education materials and programs helped educate and, in practice, train providers. For example, because providers knew that a patient education video was being shown to all patients, the video helped normalize some practices that initially were not particularly comfortable for staff (e.g., the video showed that it was normal for staff to repeatedly ask an inpatient for his/her name and date of birth).²⁴⁶ Likewise, letters and flyers sent to physicians and nursing staff about an intervention to encourage patients to ask providers about hand washing actually increased compliance with hand washing before the start of the intervention; the intervention then provided continuous support.²⁴⁷

Component 4: Health Leadership and Implementation Materials. Finally, we reviewed tools that focused on hospital leadership and implementation (26 out of 213 tools). Most tools related to this component focused on steps or tips for hospitals to promote and support organizational change as it relates to patient safety or patient-centered care. Also, we reviewed some organization assessment tools on such topics as readiness for change and assessment of patient- and family-centered care.

Modes of Distribution and Implementation

In our review of tools, we assessed modes of distribution and guidance available for implementation.

Modes of distribution. Across all components, most tools reviewed were paper-based and included brochures, handouts, flyers, posters, checklists, booklets, and handbooks. These materials were publicly available online.

The majority of tools related to Components 1 and 3 were handouts (e.g., brochures, flyers, pamphlets), with the exception of materials from the Veterans Health Administration on infection control, which were primarily posters. In addition, we identified 15 videos to review, most related to Component 1. These videos generally addressed the following topics:

Hospital-specific orientation. Hospital-specific orientations often provided an introduction to the hospital, including a tour of the units and information about how to use the call button, bed, or TV. These videos are usually produced by or for a specific institution. In general, the videos presented factual information related to the logistics of the hospital stay instead of promoting patient and family engagement.
Patient safety. These videos provided an overview of safety issues in the hospital and what patients can expect and do (e.g., EMMI patient safety video). Most are not hospital-specific. In one post-intervention evaluation, patients reported feeling more comfortable talking with their health care workers about questions or concerns after watching a pre-admission video that covered topics related to engagement and safety, including the treatment plan, medication safety, falls, surgical site identification, hand washing, and discharge planning. The video also educated staff and physicians through increased awareness of what the hospital was encouraging patients to do and expectations for staff behavior.²⁴⁶
Proprietary educational materials. Several companies offer videos that patients and families can view either before entering the hospital or during their hospital stay about their specific condition, treatment, or procedure. Because most of these tools are proprietary or focused on a specific condition, they were not included in our review.

Tools that were reviewed related to Components 2 and 4, particularly those focusing on institution-level strategies, were more likely to be guides than brief handouts and were longer than Components 1 and 3 materials. However, as noted earlier, Component 4 tools included checklists and readiness tools for organizations.

Implementation. Most of the tools in Components 1 (active involvement) and 3 (health professionals) lack detailed guidance for how to implement them, including how materials should be distributed or by whom. Only two articles that described evaluations of safety or quality described the actual campaigns or educational initiatives related to engaging patients and family members in safety and quality. For example, one hospital system educated patients on safety issues during a National Patient Safety Week fair that focused on fall prevention, security, infection control, advance directives and living wills, prevention of medical errors, and medication safety (including providing a universal medication form to patients). Awareness of the fair was conducted through radio/TV stations, newspaper articles, and announcements in local churches and civic organizations. Although no formal evaluation was conducted, there was positive feedback from hospital staff and the community, a decrease in the number of patient complaints, and an increase in the numbers of patients carrying the universal medication forms.²⁴⁸ In an evaluation of a patient safety campaign at an Ontario hospital, only 17 percent of discharged patients surveyed had heard about the campaign; of those, a third had heard about the campaign through a brochure on patient safety tips and 14 percent used a summary form for discharge that was part of the campaign.²⁴⁹

Overall, more guidance and instructions were available related to the organizational partnership materials (Component 2). This guidance included assistance with how to create opportunities for patient and family involvement at an organizational level, the timeline for creating patient and family advisory councils, and ways to recruit and support patients and families on these councils.

Uptake and use. When implementing the hospital-level strategies discussed above, articles discussed ways to gain buy-in from clinicians or patients and family members before implementation. Several descriptions of implementation of intervention-level strategies reported including clinicians in the development process, either in terms of identifying goals and objectives related to front-line clinician needs^172,181 or soliciting feedback through surveys and focus groups about proposed programs or policy changes.^57,158,215 Another method for front-line staff included holding a poster contest illustrating how departments incorporated patient safety into daily business.²⁴⁸ As noted in the section on engaging patients at the hospital level, organizations have used patient and family advisory councils as one way to test or develop materials and tools to ensure that they meet the needs of patients and family members.

Overall Usability

As a component of our review of available tools, we conducted a usability assessment of 78 tools. We assessed these tools according to a pre-specified set of criteria that represented our "ideals" for tools to be included in the Guide. For example, these criteria included focusing on a hospital setting; reflecting target audience needs and priorities (user-centered); being actionable, (i.e., focusing on specific behaviors); having been developed with input from the target audience; and having been evaluated for effectiveness and feasibility in a hospital setting.

Overall, our usability assessment indicated that although several tools provide a strong base of information to build on, few can be used "as is" without additional testing or modification. Specific findings relating to our evaluation criteria are discussed below.

Developed with input from users. Very few tools for patients and family members (e.g., AHRQ's Five Steps to Safer Health Care, Ontario Hospital Association's Your Health Care—Be Involved campaign) had accompanying information to indicate that the development process included input and feedback from the target audience; for example, using focus groups or cognitive testing.^25,249 Some literature indicated that some organizations may have been included in the development process, especially for hospital-level changes; however, this review did not uncover information about clinician input into the specific tools reviewed. Although the development process for other tools may have included this type of research for patients, family members, and providers, the information was not published or easily available for this review.

Support for user. Often, materials suggested doing a task (e.g., be involved in decisions) but provided little support or information about exactly how to do it (e.g., what steps to take, how to get started). Simply educating individuals about the need to do something does not give them the information they need to understand how to take action, particularly in areas where they already are reluctant or uncertain about how to engage. Similarly, some information by itself may feel overwhelming if it is not accompanied by appropriate supportive messages. For example, providing patients with descriptions of medical errors and what they need to do may feel overwhelming if not coupled with information about what providers and hospitals are also doing to ensure that mistakes do not happen.

Motivation of user. Most of the tools reviewed seemed to rely on the assumption that the nature and topic of the information being addressed would be inherently motivating to users. These tools were based on an assumption that patients, families, and providers would find the information relevant and the benefits clear and that the requested actions would be aligned or consistent with their wishes. However, in a time when patients, family members, and health care professionals all are overwhelmed with information, materials need to "speak" to the intended user to be viewed as salient or relevant. Several tools used questions and answers as a strategy to motivate or engage the reader. Another motivational strategy suggested as effective by most of our key informant interviewees and many of our Steering Group members was the use of patient stories to illustrate or highlight key points. However, almost none of the tools reviewed employed this strategy.

Format, organization, and flow of information. Often, materials had well-organized content but were difficult to read because the text was too small, the font was difficult to read, or there was too much content on the page without headings to break up the text. Several of the tools reviewed had text without much white space or visuals to add interest.

Plain language. Tools for patients and family members varied in their use of plain language. Most tried to simplify language, but some seemingly "basic" terms used in the materials (e.g., patient safety, quality care, medical errors) may not be understood as intended by the target audience.¹³ Without information about the development process, it was difficult to ascertain whether the language was tested with the target audience to ensure appropriate comprehension.

Cultural inclusivity and languages available. Several tools for patients were available in other languages (mostly Spanish, but also Arabic, Chinese, and Russian). However, there was little or no information about how the materials were developed—whether in English and translated to other languages, or how the translations were done. Several tools stressed the importance of sharing different religious and cultural beliefs with providers. For the most part, tools with pictures tried to be culturally inclusive, representing people of different racial backgrounds.

Evaluation with target audience. This review found virtually no tools that had been evaluated for effectiveness or feasibility, either inside or outside a hospital setting.

Strategies and Interventions: Summary of Key Points

Overall findings. We found two broad types of strategies or interventions that promoted or facilitated patient and family engagement: hospital-level and individual-level strategies. The two types of interventions are not mutually exclusive. That is, individual-level tools may support hospital-level interventions and uptake of new individual behaviors may be facilitated by hospital-level support. With either type of strategy, there was a lack of evidence-based information associated with outcomes.
Hospital-level strategies. We grouped the hospital-levels strategies into four main categories:
- Health care team. Interventions and strategies used to engage patients and families as members of their health care team include bedside rounds, bedside change of shift reports, patient- or family-activated rapid response teams, specific efforts to encourage family participation, and access to medical record information by patients and family members.
- Facilitating communication. Implementation of procedures and policies to help patients and family members communicate with providers include understanding which staff members are involved in the patient's care and strategies to guide clinician-patient encounters.
- Increasing patient knowledge, skills, or abilities. Hospital-level strategies to increase patient and family engagement include supporting patients and families in care coordination, establishing systems for patients and family members to track medications and health records post-discharge, communicating with physicians, and providing access to health information.
- Input into management and processes. Strategies for involving patients and family members in management and processes include establishing patient and family advisory councils, eliciting patient and family feedback, and introducing other opportunities to be involved.
Individual-level strategies. We reviewed publicly available tools and resources and relevant literature and discussed the tools according to the following components of the Guide:
- Component 1. The majority of tools fell into this component. The main topics addressed were patient safety, communication with providers, patient engagement/ activation, care coordination, and infection prevention.
- Component 2. Tools were available to help hospitals implement Patient and Family Advisory Councils and provide other opportunities for engagement at this level. A smaller number of tools provided guidance for patients and family members about assuming these roles.
- Component 3. Most of the tools were targeted at clinicians instead of the broader "health professional" audience. However, the tools did not make distinctions between physicians and nurses. Main topics included communication with patients, infection control, team work and communication training, and provider training on implementation strategies.
- Component 4. Most tools related to this component focused on steps or tips for hospitals to promote and support organizational change 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 related to Components 1 (active involvement) and 3 (health professionals) lacked detailed supporting implementation guidance for how to implement them. Overall, more guidance and instructions were available for Component 2 materials.
Usability. Overall, our usability assessment indicated that although several tools provide a strong base of information to build on, few can be used "as is" without additional testing or modification.

^d. We use the term "hospital-level" interventions with the understanding that hospital level could imply hospital systems as well as individual hospitals.
^e. Because the implementation of electronic medical records (EMRs) is beyond the scope of this project, we did not specifically search for articles focusing on patient involvement in the development or use of EMRs or in outcomes associated with these online tools
^f. A list of all tools reviewed for this report is available from Pam Dardess, MPH, Senior Research Analyst, American Institutes for Research, Health Program, 100 Europa drive, Suite 315, Chapel Hill, NC 27517; phone 919-918-2311; fax 919-960-6983.
^g. For more information about TeamSTEPPS™, go to http://teamstepps.ahrq.gov/.

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Guide to Patient and Family Engagement