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Involving patients & families in improvement efforts

Improving how health care providers respond to medical injury requires an understanding of patients’ experiences. Although many injured patients strongly desire to be heard, research rarely involves them. Institutional review boards worry about harming participants by asking them to revisit traumatic events, and hospital staff worry about provoking lawsuits. Institutions’ reluctance to approve this type of research has slowed progress toward responses to injuries that are better able to meet patients’ needs. In 2015-2016, we were able to surmount these challenges and interview 92 injured patients and families in the USA and New Zealand. This article explores whether the ethical and medico-legal concerns are, in fact, well-founded. Consistent with research about trauma-research-related distress, our participants’ accounts indicate that the pervasive fears about retraumatization are unfounded. Our experience also suggests that because being heard is an important (but often unmet) need for injured patients, talking provides psychological benefits and may decrease rather than increase the impetus to sue. Our article makes recommendations to institutional review boards and researchers. The benefits to responsibly conducted research with injured patients outweigh the risks to participants and institutions.

CRP resource or tool (e.g. CANDOR)
A Roadmap for Patients and Families in the Center of Healthcare

The Roadmap for Patient and Family Engagement in Healthcare Practice and Research was created as a call to action for anyone interested in advancing work related to patient and family engagement. It includes eight change strategies and five simple actions to increase patient and family involvement in the improvement and implementation of extraordinary healthcare.


The Guide to Patient and Family Engagement in Hospital Quality and Safety was developed by the for Healthcare Research and Quality (AHRQ) to encourage patient and family involvement in healthcare quality and safety. This guide includes four key methods as follows:

  • Encourage patients and family members to participate as advisers.
  • Promote better communication among patients, family members, and health care professionals from the point of admission.
  • Implement safe continuity of care by keeping the patient and family informed through nurse bedside change-of-shift reports.
  • Engage patients and families in discharge planning throughout the hospital stay.

The response to adverse events can lack patient-centered-ness, perhaps because the involved institutions and other stakeholders misunderstand what patients and families go through after care breakdowns. A PFAC-designed simulation can help stakeholders understand patient and family experiences following adverse events and potentially improve their response to these events.



Reference to primary CRP related organization (e.g. CAI website)
Web resource/Digital Article
General website that contains CRP related information, may be non-specific or general or mixed resources on a website. Article published on-line. Not available as paper version.
Institute for Healthcare Improvement (IHI) and the National Patient Safety Foundation (NPSF)

The Institute for Healthcare Improvement (IHI) and the National Patient Safety Foundation (NPSF) started collaborating together to utilize its combined resources and knowledge to further  patient safety efforts and create safety systems in various healthcare settings.

Reference to primary CRP related organization (e.g. CAI website)
Institute for Patient and Family-Centered Care

The Institute for Patient- and Family-Centered Care (IPFCC), a non-profit organization founded in 1992, takes pride in providing essential leadership to advance the understanding and practice of patient- and family-centered care. By promoting collaborative, empowering relationships among patients, families, and health care professionals, IPFCC facilitates patient- and family-centered change in all settings where individuals and families receive care and support.

Read more here.

Web resource/Digital Article
General website that contains CRP related information, may be non-specific or general or mixed resources on a website. Article published on-line. Not available as paper version.
Patient Safety Movement Foundation: If You’ve Been Harmed

This website offers resources and advice if you or a loved one has been harmed.

Journal Article
Published articles related to CRP
Patients as Partners in Learning from Unexpected Events

Patients and family members identified the factors that contributed to their respective adverse incidents, such as not following safety measures and lack of communication. Participants stated that they were not involved in the analysis process of the adverse events, so they missed out on ways to become more involved in learning about adverse events and how they can be decreased in the healthcare setting. Thus, the authors of this article emphasize that healthcare systems should implement educational modules that not only help decrease the risk of adverse events, but also teach healthcare professionals, patients, and family members on how to be proactive in preventing them.


The Institute for Healthcare Improvement (IHI) is an organization that aims to improve healthcare systems worldwide. The IHI published Safety is Personal: Partnering with Patients an Families for the Safest Care, a report on patient safety and quality. This report provides specific action steps for healthcare providers and policy makers to establish patient and family engagement in various dimensions of healthcare.


Reference to primary CRP related organization (e.g. CAI website)
The Beryl Institute

The Beryl Institute is a community of practice with the goals of improving patient care and experience though teamwork and share values. The institute define patient experience as the sum of all interactions, influenced by an institution’s culture, that impact patient perceptions of healthcare. Among the Beryl Institute’s various goals to improve patient experience and care, they are committed to prioritizing patients, families, and care providers first; emphasizing the importance of the entire healthcare team; and engaging a variety of perceptions and voices from various sectors.


In April 2012, Glenn Clarkson died after a medical error at a rural Kansas hospital. Melissa and Nancy Clarkson describe the three-and-a-half-years of work it took for them to learn what happened in his medical care. Filmed at the Communication and Resolution Program (CRP) Training.

This report from the Betsy Lehman Center details two sets of research findings and proposes a coordinated response through which Massachusetts’s providers, policymakers, and public can accelerate safety and quality improvement and lead the nation on this urgent health care challenge.

The Medstar’s Patient Safety and Quality Program included this video in their patient safety and care program. This video illustrates the story of Michael Skolnik, who lost his life due to medical malpractice. The error involved the surgeon not being completely transparent with the patient or his family about the surgical procedure. This video emphasizes the importance of shared decision making between patients, families, and physicians to avoid future adverse medical outcomes, especially ones in which lives are lost.



Patient and family emotional harm after medical errors may be profound. At an Agency for Healthcare Research and Quality (AHRQ) conference to establish a research agenda on this topic, the authors used visual images as a gateway to personal reflections among diverse stakeholders. Themes identified included chaos and turmoil, profound isolation, organizational denial, moral injury and betrayal, negative effects on families and communities, importance of relational skills, and healing effects of human connection. The exercise invited storytelling, enabled psychological safety, and fostered further collaborative discussion. The authors discuss implications for quality/safety, educational innovation, and qualitative research.