Executive Summary Checklist

Person and family engagement -- often referred to as "patient" and family engagement or "PFE" -- is an underutilized resource and strategy for achieving the goal of zero harm. An effective program to optimally implement and sustain PFE should include the following actionable steps: 
* Assess strengths and gaps in your organization's PFE efforts by using this checklist:  Have you...
o Elicited feedback from your senior leadership team, staff, patients and families about PFE efforts?
o Inventoried policies, processes, position descriptions and training programs to determine whether PFE is included?
o Discussed findings and conclusions with leadership, staff and patients to create awareness and lay the groundwork for improvement efforts?

* Deploy a system to implement PFE and monitor progress on improving PFE using this checklist. Did you...
o Develop an infrastructure that brings the patient and family voice systemically into your patient safety improvement work, such as:
 Appointing persons who identify as patients or patient advocates to your governing body,
 Establishing patient and family advisory bodies that contribute to organizational safety initiatives,
 Including patient advocate input into improvement committees or root cause analysis teams, and/or
 Establishing a functional area within your organization whose role and accountability is to engage patients and families?
o Select measures that will allow you to see whether processes and patient safety outcomes are changing?
o Ensure systems are in place so that needed data can be collected and shared?
o Compile results in a format that is easy to understand and monitor?
o Share results with staff, senior leadership, board, community and public?
[Adapted from Healthcare Research & Educational Trust, A Leadership Resource for Patient and Family Engagement Strategies \cite{trust}.]

The Performance Gap

Despite widespread recognition of patient safety as a public health issue since at least 1999, preventable patient harm still occurs.  Estimates suggest that the problem may be getting worse not better, although arguably the larger and more alarming estimates now are a product of more effective measurement.  For example, deaths due to medical error in United States hospitals were estimated at 180,000 annually by the landmark Harvard Medical Practice Study in 1984 \cite{Leape_1995}.  New research in 2016 suggest that U.S. hospital deaths attributed to medical error are 250,000, making it the 3rd largest cause of preventable death .  Existing research or public health data still lacks the ability to reliably estimate preventable harm due to missed, wrong or miscommunicated diagnoses.   And data on harm due to medical error in non-acute care settings are still just guesses.
Whatever the estimates the challenge before us is huge and touches millions of people worldwide.
The promising news is that collaborative efforts among healthcare provider organizations, thought leaders and policymaking bodies, payors positioned to incentivize achievement of expected outcomes, innovators and researchers, educators, nonprofit/non-governmental advocacy groups, product makers and activated people who use healthcare can make a difference.  Through focused attention and aligned efforts in the United States driven by the Centers for Medicare and Medicaid Services (CMS), measureable patient harm was reduced by 21% between 2010 and 2015, resulting in 125,000 few deaths, 3 million fewer injuries and $28 billion in saved costs.    At the local level, collaboration between the public health sector, hospitals and outcomes improvement experts reduced hospital readmissions by 7,000 in Minnesota between 2011 and 2013, enabling patients in Minnesota to spend 28,120 nights sleeping in their own beds instead of the hospital, and helping reduce healthcare costs by more than $55 million. 
PFE is an underused "natural resource" for improving the safety of care.  Users of healthcare and their family members play substantial roles in managing care and often see and learn things that care providers and researchers miss.  If their observations, insights and lessons learned are overlooked in safety improvement, the organization loses important opportunities to prevent harm.  In a 2013 editorial, then Health Affairs Editor Susan Dentzer recognized the value of PFE in characterizing it as the "blockbuster drug" of the 21st Century, observing:
Even in an age of hype, calling something "the blockbuster drug of the century" grabs our attention. In this case, the "drug" is actually a concept--patient activation and engagement--that should have formed the heart of health care all along.
Ample evidence has accumulated demonstrating that patients who are actively engaged partners in managing their own chronic healthcare conditions achieve measurably better outcomes.   Moreover, persons who use care or manage its use for loved ones are typically highly motivated to partner with their professional and organizational care providers to improve safety.  Their experiences bring an urgency to the patient safety movement that propels action by generating empathy -- they engage our hearts as well as our minds and hands.  In 2006 the World Health Organization captured this urgent offer to partner in the London Declaration of its Patients for Patient Safety group, a core component of its Global Patient Safety Programme :