Defining Patient and Family Engagement
Patient and family engagement (PFE) leads to an environment where “patients, families, clinicians, and hospital staff all work together as partners to improve the quality and safety of healthcare.” In a clinical environment that fosters strong PFE, patients or family members are seen as partners and essential members of the healthcare team with perspectives critical to the clinical decision-making process, but also to the overarching design and implementation of organizational programs and policies.1, An engaged patient is one that actively takes part in this partnership. Research has demonstrated that patients who are more actively engaged in their care have better outcomes.
Organizations throughout the healthcare sector are considering innovative approaches to incorporate PFE as a part of their overarching strategic priorities. For example, the Agency for Healthcare Research and Quality (AHRQ) has developed resources to support PFE in primary care, during care transitions, and in hospital settings. Other organizations, notably PFCCPartners, provide support to institutions seeking to establish patient and family advisory councils (PFACs) to support execution of their PFE priorities., However, across all of these different efforts is a need for measurement to assess the effectiveness and impact on patients and their outcomes.
Measurement of PFE
There are currently a number of ways that entities can assess the level of PFE at their organizations. However, several of these measurement approaches are perhaps better described as generating proxy measurements of patient engagement. For example, the different iterations of the AHRQ Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey can be used to assess a patient’s experience with care. Research has found that greater levels of engagement are linked to higher levels of care satisfaction.3 Similarly, while the use of patient-reported outcome measures is not a direct measurement of patient engagement, ensuring patients a means of providing their feedback is a potential approach for increasing patient engagement.
A more direct link to patient engagement is the Patient Activation Measure (PAM). PAM is used to determine level of patient activation and assess which of four stages the patient is at: 1) believing the patient role is important; 2) having the confidence and knowledge necessary to take action; 3) actually taking action to maintain and improve one’s health; and 4) staying the course even under stress. Initially, a 100-item scale was created for use in research. Since then, abridged versions of the questionnaire have been developed for more practical application in real-world clinical care.
Figure 1: CMS Initiative PFE Measures
PfP PFE Measures:
- Planning Checklist for Scheduled Admissions
- Shift Change Huddles/Bedside Reporting with Patients and Families
- Accountable Leader of Program Area
- Having a PFAC/Patient and Family Engagement Council or a Patient/Family Representative on the Quality Improvement Team
- Patient and Family on Hospital Governing and/or Leadership Board (hospital governance)
TCPI PFE Measures:
- Support for Patient and Family Voices
- Shared Decision-Making
- Patient Activation
- Active e-Tool
- Health Literacy Survey
- Medication Management
In recent years, Centers for Medicare & Medicaid Services (CMS) initiatives have sought to provide more robust measurement of true PFE. These initiatives focused on process measures assessing whether entities have in place processes, structural components, and organizational policies critical for supporting strong PFE. While the programs have concluded, the PFE metrics developed for the Partnership for Patients (PfP) and Transforming Clinical Practice Initiative (TCPI) are included in Figure 1. In addition to the metrics used by these initiatives, CMS Quality Improvement Organizations also implemented initiatives designed to promote PFE that were designed to enhance patient advocacy, promote PFE via PFACs, generate system improvements that target safety, and better coordinate care management and improvement.
PFE in the Measure Development Process
In addition to measures specifically focused on PFE, CMS encourages PFE in the development of clinical measures to ensure that measures are meaningful to patients. Per the Measures Management System Blueprint, CMS would like measure developers to actively engage with patients as critical stakeholders in the development process. In particular, CMS wants to ensure that outcomes assessed in measures are priorities for patients. To support measure developers in these efforts, in April 2020 CMS released a toolkit for developers, and maintains a compilation of resources targeted toward members of the public to help them get more involved in the measurement development process. These resources focus on the inclusion of patients, families, and advocates on technical expert panels as well as in the public comment period process.
Future of PFE Measurement
As with other areas of healthcare measurement, process measures in PFE are essential for healthcare organizations to establish evidence-based, systematic improvement efforts in how they approach PFE. These process measures can help organizations identify concrete areas where they need to target their efforts to enhance PFE. However, for organizations that are experienced with PFE or have advanced PFE programs, PFE measurement needs to evolve to include a link back to patient outcomes. Not only can the development of PFE outcome measures help organizations systematically track the impact of PFE on patient outcomes and determine the most effective approaches, but generated data can also help to support the business case for new or enhanced programs. There may be an opportunity to use Patient Reported Outcome Measures to assess the impact of PFE on outcomes from the patient’s perspective, particularly whether a patient feels that his or her contribution to the care team and treatment plan was impactful.
In addition to the development of PFE outcome measures, there is an opportunity to expand upon the available process measures to assess more advanced nuances of an organization’s PFE policies and procedures. For example, additional process measures could evaluate connections between the care setting and community resources. Other process measures could assess whether dedicated budget or staff members are allocated to PFE programs. These types of measures could provide a more comprehensive picture of PFE efforts, something that could be critical should PFE programs not be translating into desired outcomes.
In advancing PFE measurement there are a number of challenges that will need to be overcome. The first concerns data collection and ensuring that any new measures can be seamlessly calculated using data with minimum disruption to the clinical workflow. The second concerns ensuring that the scope and topic of any new measures are appropriate, particularly if the measure will be calculated using patient-reported data. While it is important to expand and mature the PFE measurement landscape, it is critical to ensure that any new metrics to which institutions are held provide meaningful assessment.
In his professional role, Stephen Hoy provides patient and family engagement technical expertise to measure development organizations, including the National Quality Forum, American College of Physicians, Centers for Medicare & Medicaid Services, and BlueCross BlueShield.
Patient Family Advisor
Long Beach, CA
Long Beach, CA
Eleanor Fitall, MPH
Senior Research Associate, IMPAQ Health
Kendall K. Hall, MD, MS
Managing Director, IMPAQ Health
Kate R. Hough, MA
Editor, IMPAQ Health
 Steward M, Brown JB, Donner A, et al. The impact of patient-centered care on outcomes. J Fam Pract. 2000;49(9):796-804. [PubMed]
 Hibbard JH, Stockard J, Mahoney ER, Tusler M. Development of the Patient Activation Measure (PAM): conceptualizing and measuring activation in patients and consumers. Health Serv Res. 2004;39(4 Pt 1):1005-1026. doi:10.1111/j.1475-6773.2004.00269.x. [PubMed]