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 Apology and Disclosure Grand Rounds NWH incorporates a video simulated error and a presentation about “When Things Go Wrong”. The presentation discusses disclosure coaching & peer support, the emotional impact of errors on clinicians, and principles for transparent & compassionate disclosure and apology.

Background
Many health care organizations want to improve their responses to patients who suffer medical injuries. Their ability to understand how well they meet patients’ needs is limited by the lack of suitable instruments for assessing injured patients’ experiences.
Methods
This study aimed to generate items for a patient experience questionnaire that medical facilities can use to assess how well resolution met patients’ needs. The Medical Injury Reconciliation Experiences Survey (MIRES) was based on findings from previous studies of New Zealand and American patients’ experiences of non-litigation resolution of medical injuries. The researchers performed a content analysis of 24 transcripts from a stratified random sample of 92 interviews from the prior studies. Themes were extracted to develop a draft questionnaire, which was revised following feedback from experts. Cognitive debriefing interviews were conducted with 24 New Zealand and American injured patients.
Results
There were 40 items in the following domains: perceptions of communications with health care providers after the injury (15 items), perceptions of remedial gestures (11 items), indicia of the patient’s overall satisfaction with the reconciliation process (4 items), the nature and impacts of the injury (5 items), and patients’ characteristics (5 items). Participants’ feedback about the questionnaire was predominantly positive. Their suggestions led to 37 revisions.
Conclusion
The MIRES was comprehensible and acceptable to this group of post-injury patients. While further testing is desirable, the MIRES offers promise as a practicable approach that health care organizations can use to assess how well their reconciliation processes met patients’ needs.

Webinar Date: April 26, 2022

Moderator

• Caitlin Harrington. MD, JD

Speaker Panel

• Jeffrey N. Catalano, JD
• Jeff Goldenberg, MD
• Naomi Kirtner
• Jo Shapiro, MD, FACS

Webinar Date: March 17, 2022

Moderator

• Caitlin Harrington. MD, JD

Speakers

• Dr. Jeff Goldenberg and Naomi Kirtner, co-founders of Talia’s Voice

Discerning complicated approach of ethics and professionalism in medicine can be difficult. It’s similarly challenging when clinicians have to navigate through clinical or relational situation and develop an understanding of ethical, legal and more issues.

The Case Files consist of carefully crafted cases designed to stimulate proper approach and decision-making process. Case 18 focuses on transparent and compassionate disclosure and apology, and recognizing emotional challenged clinicians may face after an adverse event.

VitalTalk has released the COVID Ready Communication Skills resource to help healthcare professionals navigate COVID-19 related conversations with their patients and families.

VitalTalk is a Seattle based nonprofit organization that provides resources and training for health care clinicians in effective communication.

Despite the obvious need for open conversations with patients and their families following an adverse event, many organizations still lack the structure to support providers during this difficult time. In many cases, clinicians who have to disclose errors to patients and families fail due to lack of provider education and training, lack of confidence, fears of litigation and emotional distress.

The Ask-Tell-Ask Model focuses on successful disclosure coaching conversations. It includes:

1. Case Scenario
2. Key elements
3. Practical step-by-step strategies for disclosure coaching
4. Pedagogical model using the “Ask-Tell-Ask” approach
5. Organizational considerations for establishing a coaching program

A short video of Dr. Shapiro speaking on disclosure of medical error to patients and families. This video is part of “Choosing Wisdom: The Path Through Adversity” documentary.

Early Discussion & Resolution (EDR) Conversation Guidance from Oregon Patient Safety Commission offers general guidance that can serve as a foundation in initiating conversations and follow ups.

An adverse event can gravely affect both patients and their families and providers. Having a conversation between healthcare providers and patients about the incident can bring resolution and closure.

Goals of EDR from Oregon Patient Safety Commission:

1. Prevent an unfortunate situation from escalating
2. Restore the keystone of healthcare—the provider-patient relationship
3. Bring greater peace of mind to everyone
4. Learn from events to improve patient safety

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.

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.

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.

The video demonstrates how medical professionals can talk about medical errors with the care team, patients and their families. It includes two disclosure scenarios and didactic lecture on disclosure.

Key points:

1. common emotional response
2. preparing for the conversation
3. the initial conversation
4. avoiding common mistakes
5. physician support

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

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.

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.

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.

Serious Illness Care Program COVID-19 Response Toolkit by Ariadne Labs, first version was published on April 3, 2020.

Ariadne Labs, one of Collaborative for Accountability and Improvement’s partners in cultivating high-quality, patient-centered care, has developed the Serious Illness Care Program’s COVID-19 Response Toolkit to help clinicians with difficult conversations with high risk COVID-19 patients.

Table of Contents: 

1. COVID-19 Conversation Guide for Outpatient Care
2. Telehealth Communication Tips
3. Recommendation Aid
4. Care Planning Resources

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.

This consensus paper of the Harvard-affiliated hospitals was prepared by clinicians, risk managers, and patients to provide an in-depth understanding of preventable adverse events, their impact on patients, families, and providers, and how to manage such events. The report provides detailed guidelines based on the premise that all care should be safe and patient-centered and that all actions require full disclosure. In addition to offering recommendations on how to effectively communicate with patients and families, the report discusses support for caregivers and a detailed strategy for institutions to respond to such events in a timely and appropriate fashion. Finally, the comprehensive report offers several appendices that include recommendations and a case study on communicating with patients and families.