Person & Family Engagement

Publication ID: 8743921650
Published on: September 2023
Major Revision: June 10, 2024

Overview

Our actionable evidence-based practices were designed by world-renowned patient safety experts to serve as proven step-by-step guidelines on eliminating the top causes of preventable harm. This blueprint has a proven track record of ensuring the best patient care. Please note that our guidelines are continually updated and incorporate the latest safety practices recognized as the gold standard of care.
Frontline staff

This blueprint outlines the steps that frontline staff can follow to improve person and family engagement: 

Best Practice Summary:

  1. Admission:
    1. Ensure patients are prepared before their healthcare interaction.
    2. Understand the key family point of contact.
    3. Provide patients and family members with the tools needed to stay engaged in their care.
    4. Be aware of personal biases that may influence the ability to listen.
  2. Routine Care:
    1. Inquire about patient preferences and patient routines that may impact health decision-making.
    2. Maintain open and respective lines of communication with patients and family members across the continuum of care.
    3. Create an environment that promotes transparency and learn from patient and family member experiences after a medical error.
    4. Use language that patients and family members can understand and provide visual aids for decision-making.
    5. Address all limitations from patients that affect their active involvement in their care.
  3. Discharge:
    1. Assess barriers to patient’s ability to follow the care plan after discharge.
    2. Provide necessary information about how, when, and where to seek help if needed.
    3. Engage patients with tools for continued engagement, such as digital health technologies.

Clinical Workflow:

  1. Always show respect for everyone’s background, wishes, and decisions.
  2. Allow time:
    1. For patients and family members to ask questions in every discussion
    2. To engage in active listening (e.g., asking open-ended questions, pausing to listen, etc.)
    3. To give them an opportunity to explain themselves
  3. Provide:
    1. Patients and family members with a tool to track their care
    2. All updates to patients and family members and what these updates mean for their care
    3. An explanation behind any diagnosis, medication, route of care, and room transfer
    4. Transparency
    5. Definitions for every aspect of their care and what it means for them
    6. Information on how to access their medical records (e.g., via the electronic patient portal, written documents, etc.)
    7. Feedback to leadership about why PFE matters to you
  4. Be aware of your own biases and understand how they impact your ability to listen and act.
  5. Admission/Entry
    1. Prepare patients to engage in their care before the interaction.
    2. Explain (in verbal and written format):
      1. Who you are
      2. Who’s who in the facility
      3. Resources they should be aware of
      4. What to expect in their care
      5. Main points to ask healthcare professionals during their care
      6. The importance of speaking up with any questions or concerns
      7. Who to contact, how, and when
    3. Determine:
      1. Key family point of contact, and how and when to contact them
      2. Wishes around advance care directives, goals, etc.
  6. Routine Care:
    1. Ask about and/or evaluate:
      1. Their normal lives/routines
      2. Their preferences
      3. Who will be involved in their care
      4. Any limitations they have and resources that could be engaged
    2. Remain watchful for PFE opportunities in:
      1. Discussions of when/how patients and family members can contribute to their care (e.g., reporting changes in status beyond what’s usual, providing oral care, etc.)
      2. Discussions with patients and family members after an emergency
      3. Shift change huddles/bedside reporting
      4. Open-ended questions and teach back
    3. Explain:
      1. How and when to use available technologies/tools and their purposes as they relate to the patient’s individual circumstance
      2. Information for management of their care
      3. Any risks in their care, how to detect these risks, and what to do
    4. Prepare the patient and family members for:
      1. Their participation prior to a shift change huddle/bedside reporting (e.g., prioritizing questions, taking notes, etc.)
      2. Discharge as early as possible by explaining instructions and next steps
  1. Discharge/Exit
    1. Assess:
      1. Patient comfort with their discharge by asking open-ended questions at multiple times
      2. Barriers related to the patient’s self-management and ways to overcome them by setting realistic goals
    2. Express:
      1. Opportunities for patients to partner in organizational structure
      2. Genuine hope for their involvement and next steps they can take to become involved

Education for Patients and Family Members
The outline below provides information that should be conveyed to the patient and family members by someone on the care team in a consistent and understandable manner:

  1. Why patient and family involvement in care is important.
  2. That they are the only ones present at all times they are receiving care. Emphasize that they know what has already happened in their care.
  3. That it is okay to feel overwhelmed in the healthcare system but that they are supported by all staff.
  4. What they can do to help in their care and where to go if they have questions.
  5. How to ask the best questions.
  6. That their care team is doing everything they can to deliver excellent care and it is important that the patient and family members are fully aware of and participate in their own care plan.
  7. How to participate in the creation of their care plan.
  8. That the purpose of interdisciplinary rounds/bedside rounds are to discuss the care plan with all healthcare worker team members present and what to ask for if the family members are not able to physically be there.
  9. What a health record is, how to access their health record, and how to raise any concerns or questions.
  10. That patients and family members are equals with the healthcare professionals and that their care should center around them.
  11. What expectations patients and family members should have in their care.
  12. What bedside alarms mean, what to do if the alarm rings and staff do not arrive, and which alarms are emergencies.
  13. That providers may not have full access to the patient’s record.
  14. How the feedback from patients and family members is considered routinely in organizational processes.
  15. What “tasks” patients and family members have to keep themselves safe in the organization. Examples include:
    1. Applying compression socks and monitoring their use to prevent blood clots
    2. Making sure the bed is elevated during and after meals to prevent the patient from inhaling anything other than air (e.g., food)
    3. Ensuring the patient is wearing nonslip socks to prevent falls
    4. Double checking all medications for dosage, timing, and potential interactions
    5. Responding to bedside alarms
    6. Inquiring about deep breathing exercises
    7. Helping the patient wash their hands and ensuring all providers wash their hands
    8. Speaking up if they have questions or concerns about their care and treatment
  16. Opportunities for patient and family member involvement on quality improvement projects.

 

 

 

 

 

Unit Managers

This guide outlines the steps that managers can follow to improve person and family engagement:

Person and Family Engagement Metrics to Consider Assessing:

  1. Preadmission Planning Checklist
    1. Organization has a physical planning checklist that is discussed with every patient who has a scheduled admission.
  2. Shift Change Huddles or Bedside Reporting
    1. Organization conducts shift change huddles or bedside reporting with patients and family members in all feasible cases.
  3. Designated Person and Family Engagement (PFE) Leader
    1. Organization has a designated individual (or individuals) with leadership responsibility and accountability for PFE.
  4. Patient and Family Advisory Council (PFAC) or Representative(s) on Hospital Committee
    1. Organization has an active PFAC or at least one patient who serves on a patient safety or quality improvement committee or team.
  5. Patient Representative(s) on the Board of Directors
    1. Organization has one or more patient(s) who serve on a governing and/or leadership board as a patient representative.
  6. Support for Patient and Family Voices
    1. Policies, procedures, and actions are taken to support patient and family participation in governance or operational decision-making of the practice (Patient and Family Advisory Councils, practice improvement teams, board representatives, etc.).
  7. Shared Decision-Making
    1. The practice supports shared decision-making by training and ensuring clinical teams integrate patient-identified goals, preferences, concerns, and desired outcomes into the treatment plan (e.g., those based on the individual’s culture, language, spiritual, social determinants, etc.).
  8. Patient Activation
    1. The practice utilizes a tool to assess and measure patient activation to understand how to work with or alongside the patient in supporting decision-making and self-management.
  9. Active e-Tool
    1. The practice uses an e-tool (patient portal or other e-connectivity technology) that is accessible to both patients and clinicians and that shares information, such as test results, medication lists, vitals, and other patient record data.
  10. Health Literacy Survey
    1. A health literacy patient survey is used by the practice (e.g., CAHPS Health Literacy Item Set).
  11. Medication Management
    1. The clinical team works with the patient and family to support their patient/caregiver management of medications.

Other metrics for measuring engagement can include:

  1. Number of patient and family advisors involved in the hospital
  2. Number of patient and family advisors on committees or quality improvement teams
  3. Number of staff trained in partnering with and enhancing engagement with patients and families
  4. Patient ratings of hospital care
  5. Readmission rates
  6. Patient satisfaction
  7. Patient reported experience measures (e.g., Net Promoter Score, etc.)

PFE Education:

Educational efforts should address the needs of all populations, including, but certainly not limited to, those with:

  1. Low literacy
  2. Low health literacy
  3. Disabilities
  4. Cognitive or mental health challenges
  5. Limited access to or inability to afford healthcare services
  6. Limited access to or inability to use information technology
  7. Language and cultural barriers

 Patient feedback

When possible, healthcare organizations should consider integrating patient complaints, the narrative portions of patient satisfaction surveys, or other mechanisms that patients and families use to communicate concerns about patient safety events. When seeking patient engagement via portals or feedback systems:

  • Make sure patients and family members know its purpose and how and when to access it.
  • Design the platform so it’s easy for patients and family members to access and use.
  • Have a mechanism for closed-loop communication once feedback is submitted.

 Inclusivity

However, patient advocates also cite the digital divide and urge that PFE implementers be aware that many people are not proficient using information technology, or don’t have access to it, and should take steps to ensure that these patients are not left behind.

Typical Gaps Identified in Person and Family Engagement

  1. Gap: Organizations do not have the most accurate assessment of PFE.
  2. Gap: Person and family engagement is advertised as an organizational priority but may not be meaningfully incorporated everywhere in the organization.
    1. Possible root causes: Those making the organizational decisions are not present during patient and family engagement conversations. There is no body (e.g., PFAC) focused on PFE improvement.
  3. Gap: Not everyone understands their role in PFE.
    1. Possible root causes: There is a poor ratio of healthcare professionals to patients/family members in organizational improvement groups. Patients don’t understand their role in shared decision-making conversations.
  4. Gap: There is a perception of a lack of need to engage patients and family members beyond what the organization is already doing.
    1. Possible root cause: Organizations do not have the most accurate picture of PFE.
  5. Gap: PFE is perceived as a time intensive investment with little payoff.
    1. Possible root cause: There is a lack of meaningful data capture and reporting to those doing the work.
  6. Gap: Those on the frontline don’t know what they can do to improve PFE.
    1. Possible root cause: Tools for those on the frontline to use are not readily accessible (e.g., structure for bedside hand-offs, etc.).
  7. Gap: Patients are not well equipped to be involved in their care.
    1. Possible root cause: Patients don’t have access to their data or portal.
  8. Gap: It is difficult for patients and family members to participate.
    1. Possible root cause: PFE engagement discussions are scheduled during the workday. Patients do not have a family member or advocate present during discussions.

The Ideal situation: What optimal person and family engagement would look like:

  1. Engaging patients and family members at every level across the organization
  2. Making PFE opportunities easily accessible to all (e.g., considering those with disabilities, etc.)
  3. Designing incentives around incorporating PFE in all interactions
  4. Removing existing burdens on the frontline so they can better understand their patients and family members
  5. Ensuring everyone across the organization understands how they can incorporate PFE into their roles
  6. Prioritizing patients and family members as partners in their care
  7. Continuously improving to be better than yesterday
Hospital Executives

This protocol outlines the steps that executives can follow to improve person and family engagement: 

The Problem:

Person and family engagement (PFE) is a valuable tool for clinicians to use to advance clinical improvement strategy by improving the safety of care, advancing a culture of transparency, and achieving person-centered care. Leaders are unaware of PFE’s proven effectiveness in reducing preventable harm events due to a non-robust number of quantitative measurements of its impact. Fear of transparency and accountability in many healthcare organizations further inhibits the progress that PFE can accomplish in improving patient outcomes.

The Evidence for PFE:

While it is difficult to measure improved patient outcomes based on increased person and family engagement, it has been found that comprehensive family discharge education was associated with lower presence of cough two weeks post-discharge, lower medication error rates at 12 days post-discharge, lower medication non-adherence rates, increased return to baseline health status at four weeks post-discharge, and higher rates of follow-up visits at four weeks post-discharge. Furthermore, researchers observed a significant increase in the patient knowledge of the follow-up plan and in patient satisfaction post-discharge after engaging the patient and family members in conversations leading up to discharge.

The Cost:

Failing to fully integrate patients and family members into the care team leads to miscommunication, which results in medical errors and preventable harm. The cost of a lack of PFE is reflected in negative patient outcomes linked to miscommunication or care coordination gaps. Preventable medical errors cost an average of $8,000 per hospital admission to an organization. Furthermore, uncompensated costs to patients and their families are far reaching and often uncalculated (e.g., patient legal costs, time off work, babysitters, etc.). There are also costs to employers (e.g., absenteeism and increased employee healthcare costs) and costs to society (e.g., unemployment, public assistance).

 Checklist for Leaders:

  1. In Governing Body and Executive Leadership
    1. Be intentional with person and family engagement planning and make it known that it is not optional.
      1. Designate an individual at the executive level to champion person and family engagement initiatives.
      2. Involve patients and family members in strategic planning and visioning.
      3. Implement patient and family advisory councils (PFACs) focused on safety and quality.
      4. Involve patients and their families in root cause analyses, performance improvement initiatives, and communication and resolution conversations after an adverse event.
      5. Allocate time for discussion to share successes and shortcomings in engagement.
      6. Ensure diversity in improvement work participation from those of various backgrounds, socioeconomic statuses, cultures, education levels, and ethnicities.
    2. Support PFE with budget and staff.
      1. Build a budget that overtly incorporates patient and family engagement initiatives.
      2. Appoint a consistent person/group to oversee organization’s PFE.
      3. Invest in the wellness of the healthcare worker staff. See “Workplace Safety” AEBP.
    3. Sustain progress and momentum.
      1. Communicate the organization’s PFE policy and opportunities for involvement to everyone in the organization and system.
      2. Routinely express appreciation to both patients and family members to highlight their distinguished value in the organization.
  2. In Senior Leadership
    1. Make PFE easy for those on the frontline.
      1. Adopt and promote very clear definitions and expectations of PFE.
      2. Internally market the organization’s PFAC as a resource within the organization to develop patient safety/QI intervention and obtain feedback on current practices.
      3. Assess policies, processes, position descriptions, and associated training practices to ensure PFE and person-centered care are prioritized. See “6Ps of Clinical Practice.”
      4. Adopt tools (e.g., written, digital, etc.) for a patient engagement experience for all patients’ and families’ care journey to leverage it for their provision of care.
    2. Make it easy and comfortable for patients and family members.
      1. Design patient portals with the user in mind. Personalize navigation (e.g., content the user will need, not type of resource). Solicit patient input throughout the development process.
      2. Accommodate language and other communication needs (e.g., poor hearing, cognitive disabilities, etc.) and allow everyone on the committee to contribute to agenda setting.
      3. Be prepared to explain in plain language when it cannot be avoided and avoid using medical jargon and acronyms when communicating with patients or family members.
      4. Allow patients to “comment” on their health record, whether electronic or paper, and provide a pathway for them to voice any corrections when they find errors.
      5. Be proactive in ensuring patients and their families are comfortable in healthcare settings and procedures by ensuring you have an independent hotline to personally listen to concerns, and use organizational protocols, such as codes, to maintain boundaries and avoid any disruption or errors (e.g., partner being in the delivery room but not engaging with the obstetrician or staff working, as this distraction can cause an error).
    3. Incorporate continuous education.
      1. Hold regular PFE trainings for all staff members in multimodality forms throughout the day.
      2. Use patient stories to inspire change, and debrief frontline members of areas of improvement in their workflows to foster people-centered care and patient and family engagement.
    4. Regularly measure for improvement.
      1. Clearly define goals, support staff throughout improvement initiatives, indicate measurable outcomes, and include communication opportunities at all steps in order to easily display results to be reviewed by the public and staff.
    5. Reward efforts.
      1. Reflect safety culture and PFE performance in compensation of staff responsible to enhance direct accountability, and incorporate patients’ and families’ input by using feedback forms.
Resources

AHRQ. The Guide to Improving Patient Safety in Primary Care Settings by Engaging Patients and Families. (2018).
https://www.ahrq.gov/sites/default/files/wysiwyg/professionals/quality-patient-safety/patient-family-engagement/pfeprimarycare/pfepc-fullguide-final508.pdf

Bell, S. K., et al. Speaking up about care concerns in the ICU: Patient and family experiences, attitudes and perceived barriers. (2018)
https://pubmed.ncbi.nlm.nih.gov/30002146/

CMS. PERSON AND FAMILY ENGAGEMENT TOOLKIT. (2023)
https://mmshub.cms.gov/sites/default/files/Guide-PFE-Toolkit.pdf

Engaging Patients in Patient Safety – a Canadian Guide. (2019)
https://www.healthcareexcellence.ca/en/resources/engaging-patients-in-patient-safety-a-canadian-guide/

Greysen, S Ryan et al. “Patient Recommendations to Improve the Implementation of and Engagement With Portals in Acute Care: Hospital-Based Qualitative Study.”  (2020)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6996719/

Imperial College Healthcare. (2020, May 19). Patient and public involvement. (2020)
https://www.imperial.nhs.uk/about-us/who-we-are/patient-and-public-involvement

NHS. Framework for involving  patients in patient safety. (2021).
https://www.england.nhs.uk/wp-content/uploads/2021/06/B0435-framework-for-involving-patients-in-patient-safety.pdf

Sharma E. Anjana., Et al. Patient Engagement In Health Care Safety: An Overview Of Mixed-Quality Evidence. (2018)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7060147/