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Strategy 1: Working With Patient and Families as Advisors (Implementation Handbook)

Working With Patient and Families as Advisors

Implementation Handbook

AHRQ
Agency for Healthcare Research and Quality
Advancing Excellence in Health Care www.ahrq.gov

Guide to Patient and Family Engagement

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Strategy 1: Working With Patient and Families as Advisors (Implementation Handbook)

Table of Contents

Introduction 1
Overview of the Working With Patients and Families as Advisors Strategy 1
What are the Working With Patients and Families as Advisors tools? 2
What are the resources needed? 5
Rationale for Working With Patients and Families as Advisors 5
Why are patient and family advisors important? 5
Implementing Working With Patients and Families as Advisors 6
Step 1: Identify a staff liaison 6
Step 2: Identify opportunities for involving patient and family advisors 7
Step 3: Prepare hospital leadership, clinicians, and staff to work with advisors 7
Step 4: Recruit, select, and train patient and family advisors 7
Step 5: Implement and coordinate advisor activities 7
Step 1: Identify a Staff Liaison 8
Who should be a staff liaison? 8
What are the staff liaison's responsibilities? 9
Step 2: Identify Opportunities for Working With Patient and Family Advisors 10
Advisors on short-term projects 10
Patient and family advisory councils 11
Advisors as members of quality and safety committees 11
Step 3: Prepare Hospital Leadership, Clinicians, and Staff To Work With Advisors 12
Gathering information 12
Building support 13
Recognizing challenges 14
Step 4: Recruit, Select, and Train Patient and Family Advisors 15
Recruiting potential advisors 16
Advisor information session 18
Selecting advisors: Applications and interviews 19
Orienting advisors 20
Feedback sessions and problem solving 21
Guide to Patient and Family Engagement
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Strategy 1: Working With Patient and Families as Advisors (Implementation Handbook)
Step 5: Implement and Coordinate Advisor Activities 22
Tracking advisor opportunities 22
Integrating patients and family advisors into your organization: Initial steps 23
Building a foundation for success: Tips for successful meetings and interactions 24
Tracking and communicating advisor accomplishments 27
Additional Resources 29
IPFCC Resources 29
Examples of Patient and Family Advisory Councils in Action 29
Appendix A. Working With Patient and Family Advisors on Short-Term Projects 31
Three initial activities to conduct with patient and family advisors 32
Appendix B. Establishing and Working With Patient and Family Advisory Councils 38
Advisory council membership 38
Roles and responsibilities of advisory council members 39
Time commitment 39
Advisory council mission statement 40
Advisory council bylaws 41
Advisory council goals and activities 41
Budget considerations 42
Strategies for successful advisory council meetings 42
Ongoing support of council members 46
Appendix C. Advisors as Members of Quality and Safety Committees 50
Preparing quality or safety committees for advisors' participation 50
Partnering With Patients and Families To Accelerate Improvement: Readiness Assessment 51
Preparing advisors to participate on quality and safety committees 53
References 59
Guide to Patient and Family Engagement
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Strategy 1: Working With Patient and Families as Advisors (Implementation Handbook)
"What's nice about the Guide is that it's not rigid. You can adapt the information about working with advisors to your culture and to your organization, but it's enough of a guide that you're going in the right direction." Anne Arundel Medical Center,
Patient- and Family-Centered Care Committee Member

Introduction

The Guide to Patient and Family Engagement in Hospital Quality and Safety is a resource to help hospitals develop effective partnerships with patients and family members with the ultimate goal of improving hospital quality and safety. Working with patients and families as advisors at the organizational level is a critical part of patient and family engagement and patient- and family-centered approaches to improving quality and safety. Patient and family advisors are valuable partners in efforts to reduce medical errors and improve the safety and quality of health care. The Working With Patients and Families as Advisors strategy and its tools help hospitals implement and develop effective partnerships with patients and family members at the organizational level.

This handbook gives you an overview of and rationale for the strategy. It also outlines five steps for putting this strategy into place at your hospital and includes specific suggestions for how to work with patient and family advisors. Throughout this handbook, we have included examples and real-world experiences from three hospitals that implemented the Guide strategies in a year-long pilot project: Advocate Trinity Hospital in Chicago, IL; Anne Arundel Medical Center in Annapolis, MD; and Patewood Memorial Hospital in Greenville, SC. In addition, we have provided information and examples from other hospitals that have experience working with patient and family advisors.

Overview of the Working With Patients and Families as Advisors Strategy

The goal of the Working With Patients and Families as Advisors strategy is to bring the perspectives of patients and families directly into the planning, delivery, and evaluation of care. The tools that accompany this handbook are intended to help hospitals recruit and orient patient and family advisors and prepare clinicians and hospital staff to work with patient and family advisors.

The Guide was developed for the U.S. Department of Health and Human Services' Agency for Healthcare Research and Quality by a collaboration of partners with experience in and commitment to patient and family engagement, hospital quality, and safety. Led by the American Institutes for Research, the team included the Institute for Patient and Family-Centered Care, Consumers Advancing Patient Safety, the Joint Commission, and the Health Research and Educational Trust. Other organizations contributing to the project included Planetree, the Maryland Patient Safety Center, Aurora Health Care, and Emory University Hospital. Materials in this handbook have been adapted from resources from the Institute for Patient- and Family-Centered Care, Bethesda, MD, and from Leonhardt K, Bonin D, Pagel P. Guide for developing a community-based patient safety advisory council. Rockville, MD: Agency for Healthcare Research and Quality; 2008. Available at: http://www.ahrq.gov/qual/advisorycouncil.

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Strategy 1: Working With Patient and Families as Advisors (Implementation Handbook)

What are the Working With Patients and Families as Advisors tools?

This section provides an overview of the tools included in this strategy.

Use this tool to Tool Description and formatting
Recruit patient and family advisors Tool 1
Help Improve Our Hospital: Become a Patient and Family Advisor
  • This brochure provides information on who patient and family advisors are, how they help the hospital, and who can become an advisor.
  • Format: Tri-fold brochure. The electronic version of the document provides information about how to fold the brochure by indicating the front and back covers.
Recruit new patient and family advisors Tool 2
Personal Invitation for Patient and Family Advisors
  • This postcard is for clinicians or hospital staff to give to potential patient and family advisors along with a verbal invitation to get involved. The postcard describes the role of an advisor and tells potential advisors how to get more information.
  • Format: Postcard
Identify and screen potential patient and family advisors Tool 3
Patient and Family Advisor Application Form
  • Potential advisors complete this form that includes basic demographic information, questions on why the applicant wants to be an advisor, and questions on prior relevant experiences as an advisor or volunteer.
  • Format: 3-page handout
Notify advisory council applicants of their acceptance or rejection Tool 4
Sample Invitation and Regret Letters for Advisory Council Applicants
  • These sample invitation and regret letters are for patients and family members who have applied to be advisory council members. Hospitals may wish to combine these with a personal phone call.
  • Format: 1-page letters
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Strategy 1: Working With Patient and Families as Advisors (Implementation Handbook)
Use this tool to Tool Description and formatting
Inform patient and family advisors Tool 5
Patient and Family Advisor Information Session
  • This presentation gives information on who patient and family advisors are, what they do, and how they help the hospital and provides tips from other advisors.
  • Format: PowerPoint presentation with talking points
Help people who are interested in becoming advisors self-assess their readiness Tool 6
Am I Ready to Become an Advisor?
  • This handout is to be given and completed during the advisor information session.
  • Format: 1-page handout
Help potential patient and family advisors plan how to talk about their experiences Tool 7
Sharing My Story: A Planning Worksheet
  • This handout is distributed during the advisor information session.
  • Format: 1-page handout
Identify the specific interests of potential patient and family advisors Tool 8
My Participation Interests
  • This form is completed at the end of the advisor information session.
  • Format: 1-page form
Train patient and family advisors Tool 9
Patient and Family Advisor Orientation Manual
  • This manual provides information on hospital safety and quality and on what patient and family advisors do and how they help the hospital, and provides tips about being a patient and family advisor.
  • Format: Manual
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Strategy 1: Working With Patient and Families as Advisors (Implementation Handbook)
Use this tool to Tool Description and formatting
Review confidentiality requirements with all patient and family advisors Tool 10
Sample Confidentiality Statement
  • This is a sample confidentiality statement that hospitals can ask patient and family advisors or council members to sign before participating in advisory activities.
  • Format: 1-page handout
Train clinicians and hospital staff Tool 11
Working With Patient and Family Advisors (Presentation)

Tool 12
Working With Patient and Family Advisors (Handout)
    • This is a two-part training presentation. Part 1, Introduction and Overview, discusses who patient and family advisors are, the benefits of working with them, and opportunities for doing so. Part 2, Building Effective Partnerships, helps clinicians and hospital staff develop partnership skills.
    • Format: PowerPoint presentation and talking points

  • This handout is given at the clinician and staff training session that outlines the role of patient and family advisors and opportunities for working with them.
  • Format: 2-page handout
Help clinicians and hospital staff identify opportunities for working with patient and family advisors Tool 13
Working With Patient and Family Advisors on Short-Term Projects
  • This handout is distributed at the clinician and staff training session that contains suggestions for ways in which to incorporate advisors on short-term projects along with a form to request advisor participation.
  • Format: 4-page handout
Help clinicians and hospital staff identify attitudes and behaviors that help them partner effectively with advisors Tool 14
Readiness to Partner with Patient and Family Advisors
  • This handout is given at the clinician and staff training session that contains a checklist of behaviors and attitudes.
  • Format: 1-page handout
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Strategy 1: Working With Patient and Families as Advisors (Implementation Handbook)
"You have to get input from the end users - the patients and the families as to what is going to make an impact on them, how much sense it makes to them, how readable it is to them." Implementation Coordinator,
Patewood Memorial Hospital

What are the resources needed?

Resources needed for the Working With Patients and Families as Advisors strategy will vary from hospital to hospital and depend on the size and scope of what you would like to accomplish.

  • Staffing. Resources involved include time for a staff liaison, who is the point person responsible for overseeing and coordinating the work of patient and family advisors. The staff liaison helps recruit and train advisors, identifies opportunities to involve advisors in hospital activities, oversees the work of advisors, and reports to hospital leadership about the accomplishments of advisors. At some hospitals, this is a full-time position. At other hospitals, these responsibilities are folded into an existing position. The staff liaison is an important component of success in engaging patients and families.
  • Costs. Material costs include printing of the patient and family tools for recruitment and orientation, printing of the health care professional training materials, or costs associated with making materials available online. As with other volunteers, hospitals may incur costs associated with background checks for advisors. Also, some hospitals choose to reimburse patients and families for expenses incurred during their work as advisors (e.g., parking, transportation, and child care) or offer stipends or honoraria for participation in meetings.

Rationale for Working With Patients and Families as Advisors

The goal of patient and family engagement is to create an environment where patients, families, clinicians, and hospital staff all work together as partners to improve the quality and safety of hospital care. Patient and family engagement encompasses behaviors by patients, family members, clinicians, and hospital staff, as well the organizational policies and procedures that support these behaviors.

Why are patient and family advisors important?

Patient and family advisors are individuals who have received care at your hospital and who offer insights and input to help hospitals provide care and services that are based on patient- and family-identified needs rather than the assumptions of clinicians or other hospital staff about what patients and families want.

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Strategy 1: Working With Patient and Families as Advisors (Implementation Handbook)
"We envisage patients as essential and respected partners in their own care and in the design and execution of all aspects of health care. In this new world of health care, organizations publicly and consistently affirm the centrality of patient- and family-centered care. They seek out patients, listen to them, hear their stories, are open and honest with them, and take action with them." Leape L, Berwick D, Clancy C, et al. Transforming healthcare: a safety imperative. Qual Saf Health Care 2009;18(6):424-8.

Patient and family advisors help identify what your hospital is doing well and also help pinpoint areas for improvement. Advisors can help your hospital move beyond the "what is wrong" stage to developing effective solutions.

Patient and family advisors can offer:

  • Insights about a hospital's strengths and areas where changes may be needed
  • Feedback on practices and policies that patients and families find meaningful and useful in helping them be active partners in their care
  • Timely feedback and a fuller picture of the care experience than standard patient and family satisfaction surveys provide

The benefits of working with advisors include improvements in overall systems and processes of care. This can lead to longer-term benefits including:

  • Better health outcomes for patients
  • Reduced errors and adverse events
  • Increased patient loyalty
  • Reduced risk of malpractice
  • Increased employee satisfaction
  • Improved financial performance

Implementing Working With Patients and Families as Advisors

The Working With Patients and Families as Advisors strategy is designed to be flexible and adaptable to each hospital's environment and culture. The five steps outlined in this implementation handbook can help your hospital start the process of working with advisors or move further along with your current efforts.

Step 1: Identify a staff liaison

The staff liaison works with hospital leaders to put in place the infrastructure necessary for advisor engagement; prepares staff and clinicians to work with patient and family advisors; and recruits, trains, and supports advisors.
>> Learn more: Step 1: Identify a staff liaison (on page 8)

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Strategy 1: Working With Patient and Families as Advisors (Implementation Handbook)

Step 2: Identify opportunities for involving patient and family advisors

Hospitals that have little prior experience with advisors may want to start by working with advisors on short-term projects or consultations. Or, hospitals can create a more formal structure by forming a patient and family advisory council. Hospitals that have more extensive experience may be ready to incorporate advisors as members of quality and safety committees.
>> Learn more: Step 2: Identify opportunities for involving patient and family advisors (on page 10)

Step 3: Prepare hospital leadership, clinicians, and staff to work with advisors

The engagement of hospital leadership, clinicians, and staff helps develop and sustain meaningful partnerships with patient and family advisors.
>> Learn more: Step 3: Prepare hospital leadership, clinicians, and staff to work with advisors (on page 12)

Step 4: Recruit, select, and train patient and family advisors

One of the best ways to ensure successful partnerships is to recruit advisors who are a good match with your organization's needs and then make sure they receive appropriate training.
>> Learn more: Step 4: Recruit, select, and train patient and family advisors (on page 15)

Step 5: Implement and coordinate advisor activities

Successful staff liaisons identify advisor activities, match advisors with activities, provide coaching and mentoring, and track and communicate advisor accomplishments.
>> Learn more: Step 5: Implement and coordinate advisor activities (on page 22)

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