Nicole Giammarinaro, MSN, RN, CPXP

From Northwell Health, Lake Success, NY.

Objective: Northwell Health, New York’s largest health care organization, rapidly adopted technology solutions to support patient and family communication during the COVID-19 pandemic.

Methods: This case series outlines the pragmatic, interdisciplinary approach Northwell underwent to rapidly implement patient virtual visitation processes during the peak of the initial crisis.

Results: Implementation of large-scale virtual visitation required leadership, technology, and dedicated, empathetic frontline professionals. Patient and family feedback uncovered varied feelings and perspectives, from confusion to gratitude.

Conclusion: Subsequent efforts to obtain direct patient and family perspectives and insights helped Northwell identify areas of strength and ongoing performance improvement.

Keywords: virtual visitation; COVID-19; technology; communication; patient experience.

The power of human connection has become increasingly apparent throughout the COVID-19 pandemic and subsequent recovery phases. Due to the need for social distancing, people worldwide have turned to virtual means of communication, staying in touch with family, friends, and colleagues via digital technology platforms. On March 18, 2020, the New York State Department of Health (NYSDOH) issued a health advisory, suspending all hospital visitation.¹ As a result, hospitals rapidly transformed existing in-person visitation practices to meet large-scale virtual programming needs.

Family members often take on various roles—such as advocate, emotional support person, and postdischarge caregiver—for an ill or injured loved one.² The Institute for Patient- and Family-Centered Care, a nonprofit organization founded in 1992, has been leading a cultural transformation where families are valued as care partners, as opposed to “visitors.”³ Although widely adopted and well-received in specialized units, such as neonatal intensive care units,⁴ virtual visitation had not been widely implemented across adult care settings. The NYSDOH guidance therefore required organizational leadership, innovation, flexibility, and systems ingenuity to meet the evolving needs of patients, families, and health care professionals. An overarching goal was ensuring patients and families were afforded opportunities to stay connected throughout hospitalization.

Reflecting the impact of COVID-19 surges, hospital environments became increasingly depersonalized, with health care providers wearing extensive personal protective equipment (PPE) and taking remarkable measures to socially distance and minimize exposure. Patients’ room doors were kept primarily closed, while codes and alerts blared in the halls overhead. The lack of families and visitors became increasingly obvious, aiding feelings of isolation and confinement. With fear of nosocomial transmission, impactful modalities (such as sitting at the bedside) and empathetic, therapeutic touch were no longer taking place.

With those scenarios—common to so many health care systems during the pandemic—as a backdrop, comes our experience. Northwell Health is the largest health care system in New York State, geographically spread throughout New York City’s 5 boroughs, Westchester County, and Long Island. With 23 hospitals, approximately 820 medical practices, and over 72 000 employees, Northwell has cared for more than 100 000 COVID-positive patients to date. This case series outlines a pragmatic approach to implementing virtual visitation during the initial peak and obtaining patient and family perspectives to help inform performance improvement and future programming.

Methods

Implementing virtual visitation

Through swift and focused multidisciplinary collaboration, numerous Northwell teams came together to implement large-scale virtual visitation across the organization during the first wave of the COVID crisis. The initial priority involved securing devices that could support patient-family communication. Prior to COVID, each facility had only a handful of tablets that were used primarily during leadership rounding, so once visitation was restricted, we needed a large quantity of devices within a matter of days. Through diligent work from System Procurement and internal Foundation, Northwell was able to acquire nearly 900 devices, including iPads, PadInMotion tablets, and Samsung tablets.

Typically, the benefits of using wireless tablets within a health care setting include long battery life, powerful data processing, advanced operating systems, large screens, and easy end-user navigation.⁴ During COVID-19 and its associated isolation precautions, tablets offered a lifeline for effective and socially distant communication. With new devices in hand, the system Office of the Chief Information Officer (OCIO) and site-based Information Technology (IT) teams were engaged. They worked tirelessly to streamline connectivity, download necessary apps, test devices on approved WiFi networks, and troubleshoot issues. Once set up, devices were strategically deployed across all Northwell hospitals and post-acute rehabilitation facilities.

Frontline teams quickly realized that a model similar to mobile proning teams, who focus solely on turning and positioning COVID patients to promote optimal respiratory ventilation,⁵ was needed to support virtual visitation. During the initial COVID wave, elective surgeries were not permissible, as per the NYSDOH. As a result, large numbers of clinical and nonclinical ambulatory surgery employees were redeployed throughout the organization, with many assigned and dedicated to facilitating newly created virtual visitation processes. These employees were primarily responsible for creating unit-based schedules, coordinating logistics, navigating devices on behalf of patients, being present during video calls, and sanitizing the devices between uses. Finally, if necessary, virtual interpretation services were used to overcome language barriers between staff and patients.

What began as an ad hoc function quickly became a valued and meaningful role. Utilizing triage mentality, virtual visitation was first offered during unit-based rounding protocols to those patients with the highest acuity and need to connect with family. We had no formal script; instead, unit-based leaders and frontline team members had open dialogues with patients and families to gauge their interest in virtual visitation. That included patients with an active end-of-life care plan, critically ill patients within intensive care units, and those soon to be intubated or recently extubated. Utilization also occurred within specialty areas such as labor and delivery, pediatrics, inpatient psychiatry, medical units, and long-term rehab facilities. Frontline teams appreciated the supplementary support so they could prioritize ongoing physical assessments and medical interventions. Donned in PPE, virtual visitation team members often served as physical extensions of the patient’s loved ones—holding their hand, offering prayers, and, at times, bearing witness to a last breath. In reflecting on that time, this role required absolute professionalism, empathy, and compassion.

In summer 2020, although demand for virtual visitation was still at an all-time high when ambulatory surgery was reinstated, redeployed staff returned to their responsibilities. To fill this void without interruption to patients and their families, site leaders quickly pivoted and refined processes and protocols utilizing Patient & Customer Experience and Hospitality department team members. Throughout spring 2021, the NYSDOH offered guidance to open in-person visitation, and the institution’s Clinical Advisory Group has been taking a pragmatic approach to doing that in a measured and safe manner across care settings.

Listening to the ‘voice’ of patients and families

Our institution’s mission is grounded in providing “quality service and patient-centered care.” Honoring those tenets, during the initial COVID wave, the system “Voice of the Customer End User Device Workgroup” was created with system and site-based interdisciplinary representation. Despite challenging and unprecedented times, conscious attention and effort was undertaken to assess the use and impact of virtual devices. One of the major work streams was to capture and examine patient and family thoughts, feedback, and the overall experience as it relates to virtual visitation.

The system Office of Patient & Customer Experience (OPCE), led by Sven Gierlinger, SVP Chief Experience Officer, reached out to our colleagues at Press Ganey to add a custom question to patient experience surveys. Beginning on December 1, 2020, discharged inpatients were asked to rate the “Degree to which you were able to stay connected with your family/caregiver during your stay.” Potential answers include the Likert scale responses of Always, Usually, Sometimes, and Never, with “Always” representing the Top Box score. The OPCE team believes these quantitative insights are important to track and trend, particularly since in-person and virtual visitation remain in constant flux.

In an effort to obtain additional, focused, qualitative feedback, OPCE partnered with our institution’s Digital Patient Experience (dPX) colleagues. The approach consisted of voluntary, semistructured, interview-type conversations with patients and family members who engaged in virtual visitation multiple times while the patient was hospitalized. OPCE contacted site-based Patient Experience leads, also known as Culture Leaders, at 3 hospitals, asking them to identify potential participants. This convenience sample excluded instances where the patient passed away during and/or immediately following hospitalization.

The OPCE team phoned potential interview candidates to make a personalized connection, explain the purpose of the interviews, and schedule them, if interested. For consistency, the same Digital Customer Experience Researcher on the dPX team facilitated all sessions, which were 30-minute, semiscripted interviews conducted virtually via Microsoft Teams. The tone was intentionally conversational so that patients and family members would feel comfortable delving into themes that were most impactful during their experience. After some initial ice breakers, such as “What were some of your feelings about being a patient/having a loved one in the hospital during the early days of the COVID-19 pandemic?” we moved on to some more pragmatic, implementation questions and rating scales. These included questions such as “How did you first learn about the option for virtual visitation? Was it something you inquired about or did someone offer it to you? How was it explained to you?” Patients were also asked, on a scale of 1 (easy) to 5 (difficult), to rate their experience with the technology aspect when connecting with their loved ones. They also provided verbal consent to be recorded and were given a $15 gift card upon completion of the interview.

Transcriptions were generated by uploading the interview recordings to a platform called UserTesting. In addition to these transcriptions, this platform also allowed for a keyword mapping tool that organized high-level themes and adjectives into groupings along a sentiment axis from negative to neutral to positive. Transcripts were then read carefully and annotated by the Digital Customer Experience Researcher, which allowed for strengthening of some of the automated themes as well as the emergence of new, more nuanced themes. These themes were organized into those that we could address with design and/or procedure updates (actionable insights), those that came up most frequently overall (frequency), and those that came up across our 3 interview sessions (commonality).

This feedback, along with the responses to the new Press Ganey question, was presented to the system Voice of the Customer End User Device Workgroup. The results led to robust discussion and brainstorming regarding how to improve the process to be more patient-centered. Findings were also shared with our hospital-based Culture Leaders. As many of their local strategic plans focused on patient-family communication, this information was helpful to them in considering plans for expansion and/or sustaining virtual visitation efforts. The process map in the Figure outlines key milestones within this feedback loop.

Outcomes

During the height of the initial COVID-19 crisis, virtual visitation was a new and ever-evolving process. Amidst the chaos, mechanisms to capture the quantity and quality of virtual visits were not in place. Based on informal observation, a majority of patients utilized personal devices to connect with loved ones, and staff even offered their own cellular devices to facilitate timely patient-family communication. The technology primarily used included FaceTime, Zoom, and EZCall, as there was much public awareness and comfort with those platforms.

In the first quarter of 2021, our institution overall performed at a Top Box score of 60.2 for our ability to assist patients with staying connected to their family/caregiver during their inpatient visit. With more than 6700 returned surveys during that time period, our hospitals earned Top Box scores ranging between 48.0 and 75.3. At this time, obtaining a national benchmark ranking is not possible, because the question regarding connectedness is unique to Northwell inpatient settings. As other health care organizations adopt this customized question, further peer-to-peer measurements can be established.

Regarding virtual interviews, 25 patients were initially contacted to determine their interest in participating. Of that sample, 17 patients were engaged over the phone, representing a reach rate of 68%. Overall, 10 interviews were scheduled; 7 patients did not show up, resulting in 3 completed interviews. During follow-up, “no-show” participants either gave no response or stated they had a conflict at their originally scheduled time but were not interested in rescheduling due to personal circumstances. Through such conversations, ongoing health complications were found to be a reoccurring barrier to participation.

Each of the participating patients had experienced being placed on a ventilator. They described their hospitalization as a time of “confusion and despair” in the first days after extubation. After we reviewed interview recordings, a reoccurring theme across all interviews was the feeling of gratitude. Patients expressed deep and heartfelt appreciation for being given the opportunity to connect as a family. One patient described virtual visitation sessions as her “only tether to reality when nothing else made sense.”

Interestingly enough, none of the participants knew that virtual visitation was an option and/or thought to inquire about it before a hospital staff member offered to set up a session. Patients recounted how they were weak and physically unable to connect to the sessions without significant assistance. They reported examples of not having the physical strength to hold up the tablet or needing a staff member to facilitate the conversation because the patient could not speak loudly enough and/or they were having difficulty hearing over background medical equipment noises. Participants also described times when a nurse or social worker would stand and hold the tablet for 20 to 30 minutes at a time, further describing mixed feelings of gratitude, guilt for “taking up their time,” and a desire for more privacy to have those precious conversations.

Discussion

Our institution encountered various barriers when establishing, implementing, and sustaining virtual visitation. The acquisition and bulk purchasing of devices, so that each hospital unit and department had adequate par levels during a high-demand time frame, was an initial challenge. Ensuring appropriate safeguards, software programming, and access to WiFi required ingenuity from IT teams. Leaders sought to advocate for the importance of prioritizing virtual visitation alongside clinical interventions. For team members, education was needed to build awareness, learn how to navigate technology, and troubleshoot, in real-time, issues such as poor connectivity. However, despite these organizational struggles, the hospital’s frontline professionals fully recognized and understood the humanistic value of connecting ill patients with their loved ones. Harnessing their teamwork, empathy, and innovative spirits, they forged through such difficulties to create meaningful interactions.

Although virtual visitation occurred prior to the COVID-19 pandemic, particularly in subspecialty areas such as neonatal intensive care units,⁶ it was not commonplace in most adult inpatient care settings. However, now that virtual means to communication are widely accepted and preferred, our hospital anticipates these offerings will become a broad patient expectation and, therefore, part of standard hospital care and operations. Health care leaders and interdisciplinary teams must therefore prioritize virtual visitation protocols, efforts, and future programming. It is no longer an exception to the rule, but rather a critical approach when ensuring quality communication between patients, families, and care teams.

We strive to continually improve by including user feedback as part of an interactive design process. For a broader, more permanent installation of virtual visitation, health care organizations must proactively promote this capability as a valued option. Considering health literacy and comfort with technology, functionality, and logistics must be carefully explained to patients and their families. This may require additional staff training so that they are knowledgeable, comfortable with, and able to troubleshoot questions/concerns in real time. There needs to be an adequate number of mobile devices available at a unit or departmental level to meet short-term and long-term demands. Additionally, now that we have emerged from our initial crisis-based mentality, it is time to consider alternatives to alleviate the need for staff assistance, such as mounts to hold devices and enabling voice controls.

Conclusion

As an organization grounded in the spirit of innovation, Northwell has been able to quickly pivot, adopting virtual visitation to address emerging and complex communication needs. Taking a best practice established during a crisis period and engraining it into sustainable organizational culture and operations requires visionary leadership, strong teamwork, and an unbridled commitment to patient and family centeredness. Despite unprecedented challenges, our commitment to listening to the “voice” of patients and families never wavered. Using their insights and feedback as critical components to the decision-making process, there is much work ahead within the realm of virtual visitation.

Acknowledgements: The authors would like to acknowledge the Northwell Health providers, frontline health care professionals, and team members who worked tirelessly to care for its community during initial COVID-19 waves and every day thereafter. Heartfelt gratitude to Northwell’s senior leaders for the visionary leadership; the OCIO and hospital-based IT teams for their swift collaboration; and dedicated Culture Leaders, Patient Experience team members, and redeployed staff for their unbridled passion for caring for patients and families. Special thanks to Agnes Barden, DNP, RN, CPXP, Joseph Narvaez, MBA, and Natalie Bashkin, MBA, from the system Office of Patient & Customer Experience, and Carolyne Burgess, MPH, from the Digital Patient Experience teams, for their participation, leadership, and syngeristic partnerships.

Corresponding Author: Nicole Giammarinaro, MSN, RN, CPXP, Director, Patient & Customer Experience, Northwell Health, 2000 Marcus Ave, Lake Success, NY 11042; nfilippa@northwell.edu.

Financial disclosures: Sven Gierlinger serves on the Speakers Bureau for Northwell Health and as an Executive Board Member for The Beryl Institute.

From Northwell Health, Lake Success, NY.

Objective: Northwell Health, New York’s largest health care organization, rapidly adopted technology solutions to support patient and family communication during the COVID-19 pandemic.

Methods: This case series outlines the pragmatic, interdisciplinary approach Northwell underwent to rapidly implement patient virtual visitation processes during the peak of the initial crisis.

Results: Implementation of large-scale virtual visitation required leadership, technology, and dedicated, empathetic frontline professionals. Patient and family feedback uncovered varied feelings and perspectives, from confusion to gratitude.

Conclusion: Subsequent efforts to obtain direct patient and family perspectives and insights helped Northwell identify areas of strength and ongoing performance improvement.

Keywords: virtual visitation; COVID-19; technology; communication; patient experience.

The power of human connection has become increasingly apparent throughout the COVID-19 pandemic and subsequent recovery phases. Due to the need for social distancing, people worldwide have turned to virtual means of communication, staying in touch with family, friends, and colleagues via digital technology platforms. On March 18, 2020, the New York State Department of Health (NYSDOH) issued a health advisory, suspending all hospital visitation.¹ As a result, hospitals rapidly transformed existing in-person visitation practices to meet large-scale virtual programming needs.

Family members often take on various roles—such as advocate, emotional support person, and postdischarge caregiver—for an ill or injured loved one.² The Institute for Patient- and Family-Centered Care, a nonprofit organization founded in 1992, has been leading a cultural transformation where families are valued as care partners, as opposed to “visitors.”³ Although widely adopted and well-received in specialized units, such as neonatal intensive care units,⁴ virtual visitation had not been widely implemented across adult care settings. The NYSDOH guidance therefore required organizational leadership, innovation, flexibility, and systems ingenuity to meet the evolving needs of patients, families, and health care professionals. An overarching goal was ensuring patients and families were afforded opportunities to stay connected throughout hospitalization.

Reflecting the impact of COVID-19 surges, hospital environments became increasingly depersonalized, with health care providers wearing extensive personal protective equipment (PPE) and taking remarkable measures to socially distance and minimize exposure. Patients’ room doors were kept primarily closed, while codes and alerts blared in the halls overhead. The lack of families and visitors became increasingly obvious, aiding feelings of isolation and confinement. With fear of nosocomial transmission, impactful modalities (such as sitting at the bedside) and empathetic, therapeutic touch were no longer taking place.

With those scenarios—common to so many health care systems during the pandemic—as a backdrop, comes our experience. Northwell Health is the largest health care system in New York State, geographically spread throughout New York City’s 5 boroughs, Westchester County, and Long Island. With 23 hospitals, approximately 820 medical practices, and over 72 000 employees, Northwell has cared for more than 100 000 COVID-positive patients to date. This case series outlines a pragmatic approach to implementing virtual visitation during the initial peak and obtaining patient and family perspectives to help inform performance improvement and future programming.

Methods

Implementing virtual visitation

Through swift and focused multidisciplinary collaboration, numerous Northwell teams came together to implement large-scale virtual visitation across the organization during the first wave of the COVID crisis. The initial priority involved securing devices that could support patient-family communication. Prior to COVID, each facility had only a handful of tablets that were used primarily during leadership rounding, so once visitation was restricted, we needed a large quantity of devices within a matter of days. Through diligent work from System Procurement and internal Foundation, Northwell was able to acquire nearly 900 devices, including iPads, PadInMotion tablets, and Samsung tablets.

Typically, the benefits of using wireless tablets within a health care setting include long battery life, powerful data processing, advanced operating systems, large screens, and easy end-user navigation.⁴ During COVID-19 and its associated isolation precautions, tablets offered a lifeline for effective and socially distant communication. With new devices in hand, the system Office of the Chief Information Officer (OCIO) and site-based Information Technology (IT) teams were engaged. They worked tirelessly to streamline connectivity, download necessary apps, test devices on approved WiFi networks, and troubleshoot issues. Once set up, devices were strategically deployed across all Northwell hospitals and post-acute rehabilitation facilities.

Frontline teams quickly realized that a model similar to mobile proning teams, who focus solely on turning and positioning COVID patients to promote optimal respiratory ventilation,⁵ was needed to support virtual visitation. During the initial COVID wave, elective surgeries were not permissible, as per the NYSDOH. As a result, large numbers of clinical and nonclinical ambulatory surgery employees were redeployed throughout the organization, with many assigned and dedicated to facilitating newly created virtual visitation processes. These employees were primarily responsible for creating unit-based schedules, coordinating logistics, navigating devices on behalf of patients, being present during video calls, and sanitizing the devices between uses. Finally, if necessary, virtual interpretation services were used to overcome language barriers between staff and patients.

What began as an ad hoc function quickly became a valued and meaningful role. Utilizing triage mentality, virtual visitation was first offered during unit-based rounding protocols to those patients with the highest acuity and need to connect with family. We had no formal script; instead, unit-based leaders and frontline team members had open dialogues with patients and families to gauge their interest in virtual visitation. That included patients with an active end-of-life care plan, critically ill patients within intensive care units, and those soon to be intubated or recently extubated. Utilization also occurred within specialty areas such as labor and delivery, pediatrics, inpatient psychiatry, medical units, and long-term rehab facilities. Frontline teams appreciated the supplementary support so they could prioritize ongoing physical assessments and medical interventions. Donned in PPE, virtual visitation team members often served as physical extensions of the patient’s loved ones—holding their hand, offering prayers, and, at times, bearing witness to a last breath. In reflecting on that time, this role required absolute professionalism, empathy, and compassion.

In summer 2020, although demand for virtual visitation was still at an all-time high when ambulatory surgery was reinstated, redeployed staff returned to their responsibilities. To fill this void without interruption to patients and their families, site leaders quickly pivoted and refined processes and protocols utilizing Patient & Customer Experience and Hospitality department team members. Throughout spring 2021, the NYSDOH offered guidance to open in-person visitation, and the institution’s Clinical Advisory Group has been taking a pragmatic approach to doing that in a measured and safe manner across care settings.

Listening to the ‘voice’ of patients and families

Our institution’s mission is grounded in providing “quality service and patient-centered care.” Honoring those tenets, during the initial COVID wave, the system “Voice of the Customer End User Device Workgroup” was created with system and site-based interdisciplinary representation. Despite challenging and unprecedented times, conscious attention and effort was undertaken to assess the use and impact of virtual devices. One of the major work streams was to capture and examine patient and family thoughts, feedback, and the overall experience as it relates to virtual visitation.

The system Office of Patient & Customer Experience (OPCE), led by Sven Gierlinger, SVP Chief Experience Officer, reached out to our colleagues at Press Ganey to add a custom question to patient experience surveys. Beginning on December 1, 2020, discharged inpatients were asked to rate the “Degree to which you were able to stay connected with your family/caregiver during your stay.” Potential answers include the Likert scale responses of Always, Usually, Sometimes, and Never, with “Always” representing the Top Box score. The OPCE team believes these quantitative insights are important to track and trend, particularly since in-person and virtual visitation remain in constant flux.

In an effort to obtain additional, focused, qualitative feedback, OPCE partnered with our institution’s Digital Patient Experience (dPX) colleagues. The approach consisted of voluntary, semistructured, interview-type conversations with patients and family members who engaged in virtual visitation multiple times while the patient was hospitalized. OPCE contacted site-based Patient Experience leads, also known as Culture Leaders, at 3 hospitals, asking them to identify potential participants. This convenience sample excluded instances where the patient passed away during and/or immediately following hospitalization.

The OPCE team phoned potential interview candidates to make a personalized connection, explain the purpose of the interviews, and schedule them, if interested. For consistency, the same Digital Customer Experience Researcher on the dPX team facilitated all sessions, which were 30-minute, semiscripted interviews conducted virtually via Microsoft Teams. The tone was intentionally conversational so that patients and family members would feel comfortable delving into themes that were most impactful during their experience. After some initial ice breakers, such as “What were some of your feelings about being a patient/having a loved one in the hospital during the early days of the COVID-19 pandemic?” we moved on to some more pragmatic, implementation questions and rating scales. These included questions such as “How did you first learn about the option for virtual visitation? Was it something you inquired about or did someone offer it to you? How was it explained to you?” Patients were also asked, on a scale of 1 (easy) to 5 (difficult), to rate their experience with the technology aspect when connecting with their loved ones. They also provided verbal consent to be recorded and were given a $15 gift card upon completion of the interview.

Transcriptions were generated by uploading the interview recordings to a platform called UserTesting. In addition to these transcriptions, this platform also allowed for a keyword mapping tool that organized high-level themes and adjectives into groupings along a sentiment axis from negative to neutral to positive. Transcripts were then read carefully and annotated by the Digital Customer Experience Researcher, which allowed for strengthening of some of the automated themes as well as the emergence of new, more nuanced themes. These themes were organized into those that we could address with design and/or procedure updates (actionable insights), those that came up most frequently overall (frequency), and those that came up across our 3 interview sessions (commonality).

This feedback, along with the responses to the new Press Ganey question, was presented to the system Voice of the Customer End User Device Workgroup. The results led to robust discussion and brainstorming regarding how to improve the process to be more patient-centered. Findings were also shared with our hospital-based Culture Leaders. As many of their local strategic plans focused on patient-family communication, this information was helpful to them in considering plans for expansion and/or sustaining virtual visitation efforts. The process map in the Figure outlines key milestones within this feedback loop.

Outcomes

During the height of the initial COVID-19 crisis, virtual visitation was a new and ever-evolving process. Amidst the chaos, mechanisms to capture the quantity and quality of virtual visits were not in place. Based on informal observation, a majority of patients utilized personal devices to connect with loved ones, and staff even offered their own cellular devices to facilitate timely patient-family communication. The technology primarily used included FaceTime, Zoom, and EZCall, as there was much public awareness and comfort with those platforms.

In the first quarter of 2021, our institution overall performed at a Top Box score of 60.2 for our ability to assist patients with staying connected to their family/caregiver during their inpatient visit. With more than 6700 returned surveys during that time period, our hospitals earned Top Box scores ranging between 48.0 and 75.3. At this time, obtaining a national benchmark ranking is not possible, because the question regarding connectedness is unique to Northwell inpatient settings. As other health care organizations adopt this customized question, further peer-to-peer measurements can be established.

Regarding virtual interviews, 25 patients were initially contacted to determine their interest in participating. Of that sample, 17 patients were engaged over the phone, representing a reach rate of 68%. Overall, 10 interviews were scheduled; 7 patients did not show up, resulting in 3 completed interviews. During follow-up, “no-show” participants either gave no response or stated they had a conflict at their originally scheduled time but were not interested in rescheduling due to personal circumstances. Through such conversations, ongoing health complications were found to be a reoccurring barrier to participation.

Each of the participating patients had experienced being placed on a ventilator. They described their hospitalization as a time of “confusion and despair” in the first days after extubation. After we reviewed interview recordings, a reoccurring theme across all interviews was the feeling of gratitude. Patients expressed deep and heartfelt appreciation for being given the opportunity to connect as a family. One patient described virtual visitation sessions as her “only tether to reality when nothing else made sense.”

Interestingly enough, none of the participants knew that virtual visitation was an option and/or thought to inquire about it before a hospital staff member offered to set up a session. Patients recounted how they were weak and physically unable to connect to the sessions without significant assistance. They reported examples of not having the physical strength to hold up the tablet or needing a staff member to facilitate the conversation because the patient could not speak loudly enough and/or they were having difficulty hearing over background medical equipment noises. Participants also described times when a nurse or social worker would stand and hold the tablet for 20 to 30 minutes at a time, further describing mixed feelings of gratitude, guilt for “taking up their time,” and a desire for more privacy to have those precious conversations.

Discussion

Our institution encountered various barriers when establishing, implementing, and sustaining virtual visitation. The acquisition and bulk purchasing of devices, so that each hospital unit and department had adequate par levels during a high-demand time frame, was an initial challenge. Ensuring appropriate safeguards, software programming, and access to WiFi required ingenuity from IT teams. Leaders sought to advocate for the importance of prioritizing virtual visitation alongside clinical interventions. For team members, education was needed to build awareness, learn how to navigate technology, and troubleshoot, in real-time, issues such as poor connectivity. However, despite these organizational struggles, the hospital’s frontline professionals fully recognized and understood the humanistic value of connecting ill patients with their loved ones. Harnessing their teamwork, empathy, and innovative spirits, they forged through such difficulties to create meaningful interactions.

Although virtual visitation occurred prior to the COVID-19 pandemic, particularly in subspecialty areas such as neonatal intensive care units,⁶ it was not commonplace in most adult inpatient care settings. However, now that virtual means to communication are widely accepted and preferred, our hospital anticipates these offerings will become a broad patient expectation and, therefore, part of standard hospital care and operations. Health care leaders and interdisciplinary teams must therefore prioritize virtual visitation protocols, efforts, and future programming. It is no longer an exception to the rule, but rather a critical approach when ensuring quality communication between patients, families, and care teams.

We strive to continually improve by including user feedback as part of an interactive design process. For a broader, more permanent installation of virtual visitation, health care organizations must proactively promote this capability as a valued option. Considering health literacy and comfort with technology, functionality, and logistics must be carefully explained to patients and their families. This may require additional staff training so that they are knowledgeable, comfortable with, and able to troubleshoot questions/concerns in real time. There needs to be an adequate number of mobile devices available at a unit or departmental level to meet short-term and long-term demands. Additionally, now that we have emerged from our initial crisis-based mentality, it is time to consider alternatives to alleviate the need for staff assistance, such as mounts to hold devices and enabling voice controls.

Conclusion

As an organization grounded in the spirit of innovation, Northwell has been able to quickly pivot, adopting virtual visitation to address emerging and complex communication needs. Taking a best practice established during a crisis period and engraining it into sustainable organizational culture and operations requires visionary leadership, strong teamwork, and an unbridled commitment to patient and family centeredness. Despite unprecedented challenges, our commitment to listening to the “voice” of patients and families never wavered. Using their insights and feedback as critical components to the decision-making process, there is much work ahead within the realm of virtual visitation.

Acknowledgements: The authors would like to acknowledge the Northwell Health providers, frontline health care professionals, and team members who worked tirelessly to care for its community during initial COVID-19 waves and every day thereafter. Heartfelt gratitude to Northwell’s senior leaders for the visionary leadership; the OCIO and hospital-based IT teams for their swift collaboration; and dedicated Culture Leaders, Patient Experience team members, and redeployed staff for their unbridled passion for caring for patients and families. Special thanks to Agnes Barden, DNP, RN, CPXP, Joseph Narvaez, MBA, and Natalie Bashkin, MBA, from the system Office of Patient & Customer Experience, and Carolyne Burgess, MPH, from the Digital Patient Experience teams, for their participation, leadership, and syngeristic partnerships.

Corresponding Author: Nicole Giammarinaro, MSN, RN, CPXP, Director, Patient & Customer Experience, Northwell Health, 2000 Marcus Ave, Lake Success, NY 11042; nfilippa@northwell.edu.

Financial disclosures: Sven Gierlinger serves on the Speakers Bureau for Northwell Health and as an Executive Board Member for The Beryl Institute.

From Northwell Health, Lake Success, NY.

Objective: Northwell Health, New York’s largest health care organization, rapidly adopted technology solutions to support patient and family communication during the COVID-19 pandemic.

Methods: This case series outlines the pragmatic, interdisciplinary approach Northwell underwent to rapidly implement patient virtual visitation processes during the peak of the initial crisis.

Results: Implementation of large-scale virtual visitation required leadership, technology, and dedicated, empathetic frontline professionals. Patient and family feedback uncovered varied feelings and perspectives, from confusion to gratitude.

Conclusion: Subsequent efforts to obtain direct patient and family perspectives and insights helped Northwell identify areas of strength and ongoing performance improvement.

Keywords: virtual visitation; COVID-19; technology; communication; patient experience.

The power of human connection has become increasingly apparent throughout the COVID-19 pandemic and subsequent recovery phases. Due to the need for social distancing, people worldwide have turned to virtual means of communication, staying in touch with family, friends, and colleagues via digital technology platforms. On March 18, 2020, the New York State Department of Health (NYSDOH) issued a health advisory, suspending all hospital visitation.¹ As a result, hospitals rapidly transformed existing in-person visitation practices to meet large-scale virtual programming needs.

Family members often take on various roles—such as advocate, emotional support person, and postdischarge caregiver—for an ill or injured loved one.² The Institute for Patient- and Family-Centered Care, a nonprofit organization founded in 1992, has been leading a cultural transformation where families are valued as care partners, as opposed to “visitors.”³ Although widely adopted and well-received in specialized units, such as neonatal intensive care units,⁴ virtual visitation had not been widely implemented across adult care settings. The NYSDOH guidance therefore required organizational leadership, innovation, flexibility, and systems ingenuity to meet the evolving needs of patients, families, and health care professionals. An overarching goal was ensuring patients and families were afforded opportunities to stay connected throughout hospitalization.

Reflecting the impact of COVID-19 surges, hospital environments became increasingly depersonalized, with health care providers wearing extensive personal protective equipment (PPE) and taking remarkable measures to socially distance and minimize exposure. Patients’ room doors were kept primarily closed, while codes and alerts blared in the halls overhead. The lack of families and visitors became increasingly obvious, aiding feelings of isolation and confinement. With fear of nosocomial transmission, impactful modalities (such as sitting at the bedside) and empathetic, therapeutic touch were no longer taking place.

With those scenarios—common to so many health care systems during the pandemic—as a backdrop, comes our experience. Northwell Health is the largest health care system in New York State, geographically spread throughout New York City’s 5 boroughs, Westchester County, and Long Island. With 23 hospitals, approximately 820 medical practices, and over 72 000 employees, Northwell has cared for more than 100 000 COVID-positive patients to date. This case series outlines a pragmatic approach to implementing virtual visitation during the initial peak and obtaining patient and family perspectives to help inform performance improvement and future programming.

Methods

Implementing virtual visitation

Through swift and focused multidisciplinary collaboration, numerous Northwell teams came together to implement large-scale virtual visitation across the organization during the first wave of the COVID crisis. The initial priority involved securing devices that could support patient-family communication. Prior to COVID, each facility had only a handful of tablets that were used primarily during leadership rounding, so once visitation was restricted, we needed a large quantity of devices within a matter of days. Through diligent work from System Procurement and internal Foundation, Northwell was able to acquire nearly 900 devices, including iPads, PadInMotion tablets, and Samsung tablets.

Typically, the benefits of using wireless tablets within a health care setting include long battery life, powerful data processing, advanced operating systems, large screens, and easy end-user navigation.⁴ During COVID-19 and its associated isolation precautions, tablets offered a lifeline for effective and socially distant communication. With new devices in hand, the system Office of the Chief Information Officer (OCIO) and site-based Information Technology (IT) teams were engaged. They worked tirelessly to streamline connectivity, download necessary apps, test devices on approved WiFi networks, and troubleshoot issues. Once set up, devices were strategically deployed across all Northwell hospitals and post-acute rehabilitation facilities.

Frontline teams quickly realized that a model similar to mobile proning teams, who focus solely on turning and positioning COVID patients to promote optimal respiratory ventilation,⁵ was needed to support virtual visitation. During the initial COVID wave, elective surgeries were not permissible, as per the NYSDOH. As a result, large numbers of clinical and nonclinical ambulatory surgery employees were redeployed throughout the organization, with many assigned and dedicated to facilitating newly created virtual visitation processes. These employees were primarily responsible for creating unit-based schedules, coordinating logistics, navigating devices on behalf of patients, being present during video calls, and sanitizing the devices between uses. Finally, if necessary, virtual interpretation services were used to overcome language barriers between staff and patients.

What began as an ad hoc function quickly became a valued and meaningful role. Utilizing triage mentality, virtual visitation was first offered during unit-based rounding protocols to those patients with the highest acuity and need to connect with family. We had no formal script; instead, unit-based leaders and frontline team members had open dialogues with patients and families to gauge their interest in virtual visitation. That included patients with an active end-of-life care plan, critically ill patients within intensive care units, and those soon to be intubated or recently extubated. Utilization also occurred within specialty areas such as labor and delivery, pediatrics, inpatient psychiatry, medical units, and long-term rehab facilities. Frontline teams appreciated the supplementary support so they could prioritize ongoing physical assessments and medical interventions. Donned in PPE, virtual visitation team members often served as physical extensions of the patient’s loved ones—holding their hand, offering prayers, and, at times, bearing witness to a last breath. In reflecting on that time, this role required absolute professionalism, empathy, and compassion.

In summer 2020, although demand for virtual visitation was still at an all-time high when ambulatory surgery was reinstated, redeployed staff returned to their responsibilities. To fill this void without interruption to patients and their families, site leaders quickly pivoted and refined processes and protocols utilizing Patient & Customer Experience and Hospitality department team members. Throughout spring 2021, the NYSDOH offered guidance to open in-person visitation, and the institution’s Clinical Advisory Group has been taking a pragmatic approach to doing that in a measured and safe manner across care settings.

Listening to the ‘voice’ of patients and families

Our institution’s mission is grounded in providing “quality service and patient-centered care.” Honoring those tenets, during the initial COVID wave, the system “Voice of the Customer End User Device Workgroup” was created with system and site-based interdisciplinary representation. Despite challenging and unprecedented times, conscious attention and effort was undertaken to assess the use and impact of virtual devices. One of the major work streams was to capture and examine patient and family thoughts, feedback, and the overall experience as it relates to virtual visitation.

The system Office of Patient & Customer Experience (OPCE), led by Sven Gierlinger, SVP Chief Experience Officer, reached out to our colleagues at Press Ganey to add a custom question to patient experience surveys. Beginning on December 1, 2020, discharged inpatients were asked to rate the “Degree to which you were able to stay connected with your family/caregiver during your stay.” Potential answers include the Likert scale responses of Always, Usually, Sometimes, and Never, with “Always” representing the Top Box score. The OPCE team believes these quantitative insights are important to track and trend, particularly since in-person and virtual visitation remain in constant flux.

In an effort to obtain additional, focused, qualitative feedback, OPCE partnered with our institution’s Digital Patient Experience (dPX) colleagues. The approach consisted of voluntary, semistructured, interview-type conversations with patients and family members who engaged in virtual visitation multiple times while the patient was hospitalized. OPCE contacted site-based Patient Experience leads, also known as Culture Leaders, at 3 hospitals, asking them to identify potential participants. This convenience sample excluded instances where the patient passed away during and/or immediately following hospitalization.

The OPCE team phoned potential interview candidates to make a personalized connection, explain the purpose of the interviews, and schedule them, if interested. For consistency, the same Digital Customer Experience Researcher on the dPX team facilitated all sessions, which were 30-minute, semiscripted interviews conducted virtually via Microsoft Teams. The tone was intentionally conversational so that patients and family members would feel comfortable delving into themes that were most impactful during their experience. After some initial ice breakers, such as “What were some of your feelings about being a patient/having a loved one in the hospital during the early days of the COVID-19 pandemic?” we moved on to some more pragmatic, implementation questions and rating scales. These included questions such as “How did you first learn about the option for virtual visitation? Was it something you inquired about or did someone offer it to you? How was it explained to you?” Patients were also asked, on a scale of 1 (easy) to 5 (difficult), to rate their experience with the technology aspect when connecting with their loved ones. They also provided verbal consent to be recorded and were given a $15 gift card upon completion of the interview.

Transcriptions were generated by uploading the interview recordings to a platform called UserTesting. In addition to these transcriptions, this platform also allowed for a keyword mapping tool that organized high-level themes and adjectives into groupings along a sentiment axis from negative to neutral to positive. Transcripts were then read carefully and annotated by the Digital Customer Experience Researcher, which allowed for strengthening of some of the automated themes as well as the emergence of new, more nuanced themes. These themes were organized into those that we could address with design and/or procedure updates (actionable insights), those that came up most frequently overall (frequency), and those that came up across our 3 interview sessions (commonality).

This feedback, along with the responses to the new Press Ganey question, was presented to the system Voice of the Customer End User Device Workgroup. The results led to robust discussion and brainstorming regarding how to improve the process to be more patient-centered. Findings were also shared with our hospital-based Culture Leaders. As many of their local strategic plans focused on patient-family communication, this information was helpful to them in considering plans for expansion and/or sustaining virtual visitation efforts. The process map in the Figure outlines key milestones within this feedback loop.

Outcomes

During the height of the initial COVID-19 crisis, virtual visitation was a new and ever-evolving process. Amidst the chaos, mechanisms to capture the quantity and quality of virtual visits were not in place. Based on informal observation, a majority of patients utilized personal devices to connect with loved ones, and staff even offered their own cellular devices to facilitate timely patient-family communication. The technology primarily used included FaceTime, Zoom, and EZCall, as there was much public awareness and comfort with those platforms.

In the first quarter of 2021, our institution overall performed at a Top Box score of 60.2 for our ability to assist patients with staying connected to their family/caregiver during their inpatient visit. With more than 6700 returned surveys during that time period, our hospitals earned Top Box scores ranging between 48.0 and 75.3. At this time, obtaining a national benchmark ranking is not possible, because the question regarding connectedness is unique to Northwell inpatient settings. As other health care organizations adopt this customized question, further peer-to-peer measurements can be established.

Regarding virtual interviews, 25 patients were initially contacted to determine their interest in participating. Of that sample, 17 patients were engaged over the phone, representing a reach rate of 68%. Overall, 10 interviews were scheduled; 7 patients did not show up, resulting in 3 completed interviews. During follow-up, “no-show” participants either gave no response or stated they had a conflict at their originally scheduled time but were not interested in rescheduling due to personal circumstances. Through such conversations, ongoing health complications were found to be a reoccurring barrier to participation.

Each of the participating patients had experienced being placed on a ventilator. They described their hospitalization as a time of “confusion and despair” in the first days after extubation. After we reviewed interview recordings, a reoccurring theme across all interviews was the feeling of gratitude. Patients expressed deep and heartfelt appreciation for being given the opportunity to connect as a family. One patient described virtual visitation sessions as her “only tether to reality when nothing else made sense.”

Interestingly enough, none of the participants knew that virtual visitation was an option and/or thought to inquire about it before a hospital staff member offered to set up a session. Patients recounted how they were weak and physically unable to connect to the sessions without significant assistance. They reported examples of not having the physical strength to hold up the tablet or needing a staff member to facilitate the conversation because the patient could not speak loudly enough and/or they were having difficulty hearing over background medical equipment noises. Participants also described times when a nurse or social worker would stand and hold the tablet for 20 to 30 minutes at a time, further describing mixed feelings of gratitude, guilt for “taking up their time,” and a desire for more privacy to have those precious conversations.

Discussion

Our institution encountered various barriers when establishing, implementing, and sustaining virtual visitation. The acquisition and bulk purchasing of devices, so that each hospital unit and department had adequate par levels during a high-demand time frame, was an initial challenge. Ensuring appropriate safeguards, software programming, and access to WiFi required ingenuity from IT teams. Leaders sought to advocate for the importance of prioritizing virtual visitation alongside clinical interventions. For team members, education was needed to build awareness, learn how to navigate technology, and troubleshoot, in real-time, issues such as poor connectivity. However, despite these organizational struggles, the hospital’s frontline professionals fully recognized and understood the humanistic value of connecting ill patients with their loved ones. Harnessing their teamwork, empathy, and innovative spirits, they forged through such difficulties to create meaningful interactions.

Although virtual visitation occurred prior to the COVID-19 pandemic, particularly in subspecialty areas such as neonatal intensive care units,⁶ it was not commonplace in most adult inpatient care settings. However, now that virtual means to communication are widely accepted and preferred, our hospital anticipates these offerings will become a broad patient expectation and, therefore, part of standard hospital care and operations. Health care leaders and interdisciplinary teams must therefore prioritize virtual visitation protocols, efforts, and future programming. It is no longer an exception to the rule, but rather a critical approach when ensuring quality communication between patients, families, and care teams.

We strive to continually improve by including user feedback as part of an interactive design process. For a broader, more permanent installation of virtual visitation, health care organizations must proactively promote this capability as a valued option. Considering health literacy and comfort with technology, functionality, and logistics must be carefully explained to patients and their families. This may require additional staff training so that they are knowledgeable, comfortable with, and able to troubleshoot questions/concerns in real time. There needs to be an adequate number of mobile devices available at a unit or departmental level to meet short-term and long-term demands. Additionally, now that we have emerged from our initial crisis-based mentality, it is time to consider alternatives to alleviate the need for staff assistance, such as mounts to hold devices and enabling voice controls.

Conclusion

As an organization grounded in the spirit of innovation, Northwell has been able to quickly pivot, adopting virtual visitation to address emerging and complex communication needs. Taking a best practice established during a crisis period and engraining it into sustainable organizational culture and operations requires visionary leadership, strong teamwork, and an unbridled commitment to patient and family centeredness. Despite unprecedented challenges, our commitment to listening to the “voice” of patients and families never wavered. Using their insights and feedback as critical components to the decision-making process, there is much work ahead within the realm of virtual visitation.

Acknowledgements: The authors would like to acknowledge the Northwell Health providers, frontline health care professionals, and team members who worked tirelessly to care for its community during initial COVID-19 waves and every day thereafter. Heartfelt gratitude to Northwell’s senior leaders for the visionary leadership; the OCIO and hospital-based IT teams for their swift collaboration; and dedicated Culture Leaders, Patient Experience team members, and redeployed staff for their unbridled passion for caring for patients and families. Special thanks to Agnes Barden, DNP, RN, CPXP, Joseph Narvaez, MBA, and Natalie Bashkin, MBA, from the system Office of Patient & Customer Experience, and Carolyne Burgess, MPH, from the Digital Patient Experience teams, for their participation, leadership, and syngeristic partnerships.

Corresponding Author: Nicole Giammarinaro, MSN, RN, CPXP, Director, Patient & Customer Experience, Northwell Health, 2000 Marcus Ave, Lake Success, NY 11042; nfilippa@northwell.edu.

Financial disclosures: Sven Gierlinger serves on the Speakers Bureau for Northwell Health and as an Executive Board Member for The Beryl Institute.

From the Institute for Patient- and Family-Centered Care, Bethesda, MD (Ms. Dokken and Ms. Johnson), and Northwell Health, New Hyde Park, NY (Dr. Barden, Ms. Tuomey, and Ms. Giammarinaro).

Abstract

Objective: To describe the growth of Better Together: Partnering with Families, a campaign launched in 2014 to eliminate restrictive hospital visiting policies and to put in place policies that recognize families as partners in care, and to discuss the processes involved in implementing the initiative in a large, integrated health system.

Methods: Descriptive report.

Results: In June 2014, the Institute for Patient- and Family-Centered Care (IPFCC) launched the Better Together campaign to emphasize the importance of family presence and participation to the quality, experience, safety, and outcomes of care. Since then, this initiative has expanded in both the United States and Canada. With support from 2 funders in the United States, special attention was focused on acute care hospitals across New York State. Nearly 50 hospitals participated in 2 separate but related projects. Fifteen of the hospitals are part of Northwell Health, New York State’s largest health system. Over a 10-month period, these hospitals made significant progress in changing policy, practice, and communication to support family presence.

Conclusion: The Better Together initiative was implemented across a health system with strong support from leadership and the involvement of patient and family advisors. An intervention offering structured training, coaching, and resources, like IPFCC’s Better Together initiative, can facilitate the change process.

Keywords: family presence; visiting policies; patient-centered care; family-centered care; patient experience.

The presence of families at the bedside of patients is often restricted by hospital visiting hours. Hospitals that maintain these restrictive policies cite concerns about negative impacts on security, infection control, privacy, and staff workload. But there are no data to support these concerns, and the experience of hospitals that have successfully changed policy and practice to welcome families demonstrates the potential positive impacts of less restrictive policies on patient care and outcomes.¹ For example, hospitalization can lead to reduced cognitive function in elderly patients. Family members would recognize the changes and could provide valuable information to hospital staff, potentially improving outcomes.²

In June 2014, the Institute for Patient- and Family-Centered Care (IPFCC) launched the campaign Better Together: Partnering with Families.³ The campaign is is grounded in patient- and family- centered care, an approach to care that supports partnerships among health care providers, patients, and families, and, among other core principles, advocates that patients define their “families” and how they will participate in care and decision-making.

Emphasizing the importance of family presence and participation to quality and safety, the Better Together campaign seeks to eliminate restrictive visiting policies and calls upon hospitals to include families as members of the care team and to welcome them 24 hours a day, 7 days a week, according to patient preference. As part of the campaign, IPFCC developed an extensive toolkit of resources that is available to hospitals and other organizations at no cost. The resources include sample policies; profiles of hospitals that have implemented family presence policies; educational materials for staff, patients, and families; and a template for hospital websites. This article, a follow-up to an article published in the January 2015 issue of JCOM,¹ discusses the growth of the Better Together initiative as well as the processes involved in implementing the initiative across a large health system.

Growth of the Initiative

Since its launch in 2014, the Better Together initiative has continued to expand in the United States and Canada. In Canada, under the leadership of the Canadian Foundation for Healthcare Improvement (CFHI), more than 50 organizations have made a commitment to the Better Together program and family presence.⁴ Utilizing and adapting IPFCC’s Toolkit, CFHI developed a change package of free resources for Canadian organizations.⁵ Some of the materials, including the Pocket Guide for Families (Manuel des Familles), were translated into French.⁶

With support from 2 funders in the United States, the United Hospital Fund and the New York State Health (NYSHealth) Foundation, through a subcontract with the New York Public Interest Research Group (NYPIRG), IPFCC has been able to focus on hospitals in New York City, including public hospitals, and, more broadly, acute care hospitals across New York State. Nearly 50 hospitals participated in these 2 separate but related projects.

Education and Support for New York City Hospitals

Supported by the United Hospital Fund, an 18-month project that focused specifically on New York City hospitals was completed in June 2017. The project began with a 1-day intensive training event with representatives of 21 hospitals. Eighteen of those hospitals were eligible to participate in follow-up consultation provided by IPFCC, and 14 participated in some kind of follow-up. NYC Health + Hospitals (H+H), the system of public hospitals in NYC, participated most fully in these activities.

The outcomes of the Better Together initiative in New York City are summarized in the report Sick, Scared, & Separated From Loved Ones,² which is based on a pre/post review of hospital visitation/family presence policies and website communications. According to the report, hospitals that participated in the IPFCC training and consultation program performed better, as a group, with respect to improved policy and website scores on post review than those that did not. Of the 10 hospitals whose scores improved during the review period, 8 had participated in the IPFCC training and 1 hospital was part of a hospital network that did so. (Six of these hospitals are part of the H+H public hospital system.) Those 9 hospitals saw an average increase in scores of 4.9 points (out of a possible 11). All of the website communication improvements were related to the designation or role of the family member/care partner, or the patient’s right to choose visitors and family members/care partners, fundamental elements of the Better Together initiative.²

A Learning Community for Hospitals in New York State

With support from the NYSHealth Foundation, IPFCC again collaborated with NYPIRG and New Yorkers for Patient & Family Empowerment on a 2-year initiative, completed in November 2019, that involved 26 hospitals: 15 from Northwell Health, New York State’s largest health system, and 11 hospitals from health systems throughout the state (Greater Hudson Valley Health System, now Garnet Health; Mohawk Valley Health System; Rochester Regional Health; and University of Vermont Health Network). An update of the report Sick, Scared, & Separated From Loved Onescompared pre/post reviews of policies and website communications regarding hospital visitation/family presence.⁷ Its findings confirm that hospitals that participated in the Better Together Learning Community improved both their policy and website scores to a greater degree than hospitals that did not participate and that a planned intervention can help facilitate change.

During the survey period, 28 out of 40 hospitals’ website navigability scores improved. Of those, hospitals that did not participate in the Better Together Learning Community saw an average increase in scores of 1.2 points, out of a possible 11, while the participating hospitals saw an average increase of 2.7 points, with the top 5 largest increases in scores belonging to hospitals that participated in the Better Together Learning Community.⁷

Northwell Health is a large integrated health care organization comprising more than 69,000 employees, 23 hospitals, and more than 750 medical practices, located geographically across New York State. Embracing patient- and family-centered care, Northwell is dedicated to improving the quality, experience, and safety of care for patients and their families. Welcoming and including patients, families, and care partners as members of the health care team has always been a core element of Northwell’s organizational goal of providing world-class patient care and experience.

Four years ago, the organization reorganized and formalized a system-wide Patient & Family Partnership Council (PFPC).⁸ Representatives on the PFPC include a Northwell patient experience leader and patient/family co-chair from local councils that have been established in nearly all 23 hospitals as well as service lines. Modeling partnership, the PFPC is grounded in listening to the “voice” of patients and families and promoting collaboration, with the goal of driving change across varied aspects and experiences of health care delivery.

Through the Office of Patient and Customer Experience (OPCE), a partnership with IPFCC and the Better Together Learning Community for Hospitals in New York State was initiated as a fundamental next step in Northwell’s journey to enhance system-wide family presence and participation. Results from Better Together’s Organizational Self-Assessment Tool and process identified opportunities to influence 3 distinct areas: policy/staff education, position descriptions/performance management, and website/signage. Over a 10-month period (September 2018 through June 2019), 15 Northwell hospitals implemened significant patient- and family-centered improvements through multifaceted shared work teams (SWT) that partnered around the common goal of supporting the patient and family experience (Figure). Northwell’s SWT structure allowed teams to meet individually on specific tasks, led by a dedicated staff member of the OPCE to ensure progress, support, and accountability. Six monthly coaching calls or report-out meetings were attended by participating teams, where feedback and recommendations shared by IPFCC were discussed in order to maintain momentum and results.

Policy/Staff Education

The policy/staff education SWT focused on appraising and updating existing policies to ensure alignment with key patient- and family-centered concepts and Better Together principles (Table 1). By establishing representation on the System Policy and Procedure Committee, OPCE enabled patients and families to have a voice at the decision-making table. OPCE leaders presented the ideology and scope of the transformation to this committee. After reviewing all system-wide policies, 4 were identified as key opportunities for revision. One overarching policy titled “Visitation Guidelines” was reviewed and updated to reflect Northwell’s mission of patient- and family-centered care, retiring the reference to “families” as “visitors” in definitions, incorporating language of inclusion and partnership, and citing other related policies. The policy was vetted through a multilayer process of review and stakeholder feedback and was ultimately approved at a system Performance Improvement Coordinating Group meeting under a new title, “Visitation: Presence and Participation of Families, Support System Designees and Visitor(s) in Care.”

Three additional related policies were also updated to reflect core principles of inclusion and partnership. These included system policies focused on discharge planning; identification of health care proxy, agent, support person and caregiver; and standards of behavior not conducive in a health care setting. As a result of this work, OPCE was invited to remain an active member of the System Policy and Procedure Committee, adding meaningful new perspectives to the clinical and administrative policy management process. Once policies were updated and approved, the SWT focused on educating leaders and teams. Using a diversified strategy, education was provided through various modes, including weekly system-wide internal communication channels, patient experience huddle messages, yearly mandatory topics training, and the incorporation of essential concepts in existing educational courses (classroom and e-learning modalities).

Position Descriptions/Performance Management

The position descriptions/performance management SWT focused its efforts on incorporating patient- and family-centered concepts and language into position descriptions and the performance appraisal process (Table 2). Due to the complex nature of this work, the process required collaboration from key subject matter experts in human resources, talent management, corporate compensation, and labor management. In 2019, Northwell began an initiative focused on streamlining and standardizing job titles, roles, and developmental pathways across the system. The overarching goal was to create system-wide consistency and standardization. The SWT was successful in advising the leaders overseeing this job architecture initiative on the importance of including language of patient- and family-centered care, like partnership and collaboration, and of highlighting the critical role of family members as part of the care team in subsequent documents.

Northwell has 6 behavioral expectations, standards to which all team members are held accountable: Patient/Customer Focus, Teamwork, Execution, Organizational Awareness, Enable Change, and Develop Self. As a result of the SWT’s work, Patient/Customer Focus was revised to include “families” as essential care partners, demonstrating Northwell’s ongoing commitment to honoring the role of families as members of the care team. It also ensures that all employees are aligned around this priority, as these expectations are utilized to support areas such as recognition and performance. Collaborating with talent management and organizational development, the SWT reviewed yearly performance management and new-hire evaluations. In doing so, they identified an opportunity to refresh the anchored qualitative rating scales to include behavioral demonstrations of patient- and family-centered care, collaboration, respect, and partnership with family members.

Website/Signage

Websites make an important first impression on patients and families looking for information to best prepare for a hospital experience. Therefore, the website/signage SWT worked to redesign hospital websites, enhance digital signage, and perform a baseline assessment of physical signage across facilities. Initial feedback on Northwell’s websites identified opportunities to include more patient- and family-centered, care-partner-infused language; improve navigation; and streamline click levels for easier access. Content for the websites was carefully crafted in collaboration with Northwell’s internal web team, utilizing IPFCC’s best practice standards as a framework and guide.

Next, a multidisciplinary website shared-governance team was established by the OPCE to ensure that key stakeholders were represented and had the opportunity to review and make recommendations for appropriate language and messaging about family presence and participation. This 13-person team was comprised of patient/family partners, patient-experience culture leaders, quality, compliance, human resources, policy, a chief nursing officer, a medical director, and representation from the Institute for Nursing. After careful review and consideration from Northwell’s family partners and teams, all participating hospital websites were enhanced as of June 2019 to include prominent 1-click access from homepages to information for “patients, families and visitors,” as well as “your care partners” information on the important role of families and care partners.

Along with refreshing websites, another step in Northwell’s work to strengthen messaging about family presence and participation was to partner and collaborate with the system’s digital web team as well as local facility councils to understand the capacity to adjust digital signage across facilities. Opportunities were found to make simple yet effective enhancements to the language and imagery of digital signage upon entry, creating a warmer and more welcoming first impression for patients and families. With patient and family partner feedback, the team designed digital signage with inclusive messaging and images that would circulate appropriately based on the facility. Signage specifically welcomes families and refers to them as members of patients’ care teams.

Northwell’s website/signage SWT also directed a 2-phase physical signage assessment to determine ongoing opportunities to alter signs in areas that particularly impact patients and families, such as emergency departments, main lobbies, cafeterias, surgical waiting areas, and intensive care units. Each hospital’s local PFPC did a “walk-about”⁹ to make enhancements to physical signage, such as removing paper and overcrowded signs, adjusting negative language, ensuring alignment with brand guidelines, and including language that welcomed families. As a result of the team’s efforts around signage, collaboration began with the health system’s signage committee to help standardize signage terminology to reflect family inclusiveness, and to implement the recommendation for a standardized signage shared-governance team to ensure accountability and a patient- and family-centered structure.

Sustainment

Since implementing Better Together, Northwell has been able to infuse a more patient- and family-centered emphasis into its overall patient experience message of “Every role, every person, every moment matters.” As a strategic tool aimed at encouraging leaders, clinicians, and staff to pause and reflect about the “heart” of their work, patient and family stories are now included at the beginning of meetings, forums, and team huddles. Elements of the initiative have been integrated in current Patient and Family Partnership sustainment plans at participating hospitals. Some highlights include continued integration of patient/family partners on committees and councils that impact areas such as way finding, signage, recruitment, new-hire orientation, and community outreach; focus on enhancing partner retention and development programs; and inclusion of patient- and family-centered care and Better Together principles in ongoing leadership meetings.

Factors Contributing to Success

Health care is a complex, regulated, and often bureaucratic world that can be very difficult for patients and families to navigate. The system’s partnership with the Better Together Learning Community for Hospitals in New York State enhanced its efforts to improve family presence and participation and created powerful synergy. The success of this partnership was based on a number of important factors:

A solid foundation of support, structure, and accountability. The OPCE initiated the IPFCC Better Together partnership and established a synergistic collaboration inclusive of leadership, frontline teams, multiple departments, and patient and family partners. As a major strategic component of Northwell’s mission to deliver high-quality, patient- and family-centered care, OPCE was instrumental in connecting key areas and stakeholders and mobilizing the recommendations coming from patients and families.

A visible commitment of leadership at all levels. Partnering with leadership across Northwell’s system required a delineated vision, clear purpose and ownership, and comprehensive implementation and sustainment strategies. The existing format of Northwell’s PFPC provided the structure and framework needed for engaged patient and family input; the OPCE motivated and organized key areas of involvement and led communication efforts across the organization. The IPFCC coaching calls provided the underlying guidance and accountability needed to sustain momentum. As leadership and frontline teams became aware of the vision, they understood the larger connection to the system’s purpose, which ultimately created a clear path for positive change.

Meaningful involvement and input of patient and family partners. Throughout this project, Northwell’s patient/family partners were involved through the PFPC and local councils. For example, patient/family partners attended every IPFCC coaching call; members had a central voice in every decision made within each SWT; and local PFPCs actively participated in physical signage “walk-abouts” across facilities, making key recommendations for improvement. This multifaceted, supportive collaboration created a rejuvenated and purposeful focus for all council members involved. Some of their reactions include, “…I am so happy to be able to help other families in crisis, so that they don’t have to be alone, like I was,” and “I feel how important the patient and family’s voice is … it’s truly a partnership between patients, families, and staff.”

Regular access to IPFCC as a best practice coach and expert resource. Throughout the 10-month process, IPFCC’s Better Together Learning Community for Hospitals in New York State provided ongoing learning interventions for members of the SWT; multiple and varied resources from the Better Together toolkit for adaptation; and opportunities to share and reinforce new, learned expertise with colleagues within the Northwell Health system and beyond through IPFCC’s free online learning community, PFCC.Connect.

Conclusion

Family presence and participation are important to the quality, experience, safety, and outcomes of care. IPFCC’s campaign, Better Together: Partnering with Families, encourages hospitals to change restrictive visiting policies and, instead, to welcome families and caregivers 24 hours a day.

Two projects within Better Together involving almost 50 acute care hospitals in New York State confirm that change in policy, practice, and communication is particularly effective when implemented with strong support from leadership. An intervention like the Better Together Learning Community, offering structured training, coaching, and resources, can facilitate the change process.

Corresponding author: IPFCC, Deborah L. Dokken, 6917 Arlington Rd., Ste. 309, Bethesda, MD 20814; ddokken@ipfcc.org.

Funding disclosures: None.

From the Institute for Patient- and Family-Centered Care, Bethesda, MD (Ms. Dokken and Ms. Johnson), and Northwell Health, New Hyde Park, NY (Dr. Barden, Ms. Tuomey, and Ms. Giammarinaro).

Abstract

Objective: To describe the growth of Better Together: Partnering with Families, a campaign launched in 2014 to eliminate restrictive hospital visiting policies and to put in place policies that recognize families as partners in care, and to discuss the processes involved in implementing the initiative in a large, integrated health system.

Methods: Descriptive report.

Results: In June 2014, the Institute for Patient- and Family-Centered Care (IPFCC) launched the Better Together campaign to emphasize the importance of family presence and participation to the quality, experience, safety, and outcomes of care. Since then, this initiative has expanded in both the United States and Canada. With support from 2 funders in the United States, special attention was focused on acute care hospitals across New York State. Nearly 50 hospitals participated in 2 separate but related projects. Fifteen of the hospitals are part of Northwell Health, New York State’s largest health system. Over a 10-month period, these hospitals made significant progress in changing policy, practice, and communication to support family presence.

Conclusion: The Better Together initiative was implemented across a health system with strong support from leadership and the involvement of patient and family advisors. An intervention offering structured training, coaching, and resources, like IPFCC’s Better Together initiative, can facilitate the change process.

Keywords: family presence; visiting policies; patient-centered care; family-centered care; patient experience.

The presence of families at the bedside of patients is often restricted by hospital visiting hours. Hospitals that maintain these restrictive policies cite concerns about negative impacts on security, infection control, privacy, and staff workload. But there are no data to support these concerns, and the experience of hospitals that have successfully changed policy and practice to welcome families demonstrates the potential positive impacts of less restrictive policies on patient care and outcomes.¹ For example, hospitalization can lead to reduced cognitive function in elderly patients. Family members would recognize the changes and could provide valuable information to hospital staff, potentially improving outcomes.²

In June 2014, the Institute for Patient- and Family-Centered Care (IPFCC) launched the campaign Better Together: Partnering with Families.³ The campaign is is grounded in patient- and family- centered care, an approach to care that supports partnerships among health care providers, patients, and families, and, among other core principles, advocates that patients define their “families” and how they will participate in care and decision-making.

Emphasizing the importance of family presence and participation to quality and safety, the Better Together campaign seeks to eliminate restrictive visiting policies and calls upon hospitals to include families as members of the care team and to welcome them 24 hours a day, 7 days a week, according to patient preference. As part of the campaign, IPFCC developed an extensive toolkit of resources that is available to hospitals and other organizations at no cost. The resources include sample policies; profiles of hospitals that have implemented family presence policies; educational materials for staff, patients, and families; and a template for hospital websites. This article, a follow-up to an article published in the January 2015 issue of JCOM,¹ discusses the growth of the Better Together initiative as well as the processes involved in implementing the initiative across a large health system.

Growth of the Initiative

Since its launch in 2014, the Better Together initiative has continued to expand in the United States and Canada. In Canada, under the leadership of the Canadian Foundation for Healthcare Improvement (CFHI), more than 50 organizations have made a commitment to the Better Together program and family presence.⁴ Utilizing and adapting IPFCC’s Toolkit, CFHI developed a change package of free resources for Canadian organizations.⁵ Some of the materials, including the Pocket Guide for Families (Manuel des Familles), were translated into French.⁶

With support from 2 funders in the United States, the United Hospital Fund and the New York State Health (NYSHealth) Foundation, through a subcontract with the New York Public Interest Research Group (NYPIRG), IPFCC has been able to focus on hospitals in New York City, including public hospitals, and, more broadly, acute care hospitals across New York State. Nearly 50 hospitals participated in these 2 separate but related projects.

Education and Support for New York City Hospitals

Supported by the United Hospital Fund, an 18-month project that focused specifically on New York City hospitals was completed in June 2017. The project began with a 1-day intensive training event with representatives of 21 hospitals. Eighteen of those hospitals were eligible to participate in follow-up consultation provided by IPFCC, and 14 participated in some kind of follow-up. NYC Health + Hospitals (H+H), the system of public hospitals in NYC, participated most fully in these activities.

The outcomes of the Better Together initiative in New York City are summarized in the report Sick, Scared, & Separated From Loved Ones,² which is based on a pre/post review of hospital visitation/family presence policies and website communications. According to the report, hospitals that participated in the IPFCC training and consultation program performed better, as a group, with respect to improved policy and website scores on post review than those that did not. Of the 10 hospitals whose scores improved during the review period, 8 had participated in the IPFCC training and 1 hospital was part of a hospital network that did so. (Six of these hospitals are part of the H+H public hospital system.) Those 9 hospitals saw an average increase in scores of 4.9 points (out of a possible 11). All of the website communication improvements were related to the designation or role of the family member/care partner, or the patient’s right to choose visitors and family members/care partners, fundamental elements of the Better Together initiative.²

A Learning Community for Hospitals in New York State

With support from the NYSHealth Foundation, IPFCC again collaborated with NYPIRG and New Yorkers for Patient & Family Empowerment on a 2-year initiative, completed in November 2019, that involved 26 hospitals: 15 from Northwell Health, New York State’s largest health system, and 11 hospitals from health systems throughout the state (Greater Hudson Valley Health System, now Garnet Health; Mohawk Valley Health System; Rochester Regional Health; and University of Vermont Health Network). An update of the report Sick, Scared, & Separated From Loved Onescompared pre/post reviews of policies and website communications regarding hospital visitation/family presence.⁷ Its findings confirm that hospitals that participated in the Better Together Learning Community improved both their policy and website scores to a greater degree than hospitals that did not participate and that a planned intervention can help facilitate change.

During the survey period, 28 out of 40 hospitals’ website navigability scores improved. Of those, hospitals that did not participate in the Better Together Learning Community saw an average increase in scores of 1.2 points, out of a possible 11, while the participating hospitals saw an average increase of 2.7 points, with the top 5 largest increases in scores belonging to hospitals that participated in the Better Together Learning Community.⁷

Northwell Health is a large integrated health care organization comprising more than 69,000 employees, 23 hospitals, and more than 750 medical practices, located geographically across New York State. Embracing patient- and family-centered care, Northwell is dedicated to improving the quality, experience, and safety of care for patients and their families. Welcoming and including patients, families, and care partners as members of the health care team has always been a core element of Northwell’s organizational goal of providing world-class patient care and experience.

Four years ago, the organization reorganized and formalized a system-wide Patient & Family Partnership Council (PFPC).⁸ Representatives on the PFPC include a Northwell patient experience leader and patient/family co-chair from local councils that have been established in nearly all 23 hospitals as well as service lines. Modeling partnership, the PFPC is grounded in listening to the “voice” of patients and families and promoting collaboration, with the goal of driving change across varied aspects and experiences of health care delivery.

Through the Office of Patient and Customer Experience (OPCE), a partnership with IPFCC and the Better Together Learning Community for Hospitals in New York State was initiated as a fundamental next step in Northwell’s journey to enhance system-wide family presence and participation. Results from Better Together’s Organizational Self-Assessment Tool and process identified opportunities to influence 3 distinct areas: policy/staff education, position descriptions/performance management, and website/signage. Over a 10-month period (September 2018 through June 2019), 15 Northwell hospitals implemened significant patient- and family-centered improvements through multifaceted shared work teams (SWT) that partnered around the common goal of supporting the patient and family experience (Figure). Northwell’s SWT structure allowed teams to meet individually on specific tasks, led by a dedicated staff member of the OPCE to ensure progress, support, and accountability. Six monthly coaching calls or report-out meetings were attended by participating teams, where feedback and recommendations shared by IPFCC were discussed in order to maintain momentum and results.

Policy/Staff Education

The policy/staff education SWT focused on appraising and updating existing policies to ensure alignment with key patient- and family-centered concepts and Better Together principles (Table 1). By establishing representation on the System Policy and Procedure Committee, OPCE enabled patients and families to have a voice at the decision-making table. OPCE leaders presented the ideology and scope of the transformation to this committee. After reviewing all system-wide policies, 4 were identified as key opportunities for revision. One overarching policy titled “Visitation Guidelines” was reviewed and updated to reflect Northwell’s mission of patient- and family-centered care, retiring the reference to “families” as “visitors” in definitions, incorporating language of inclusion and partnership, and citing other related policies. The policy was vetted through a multilayer process of review and stakeholder feedback and was ultimately approved at a system Performance Improvement Coordinating Group meeting under a new title, “Visitation: Presence and Participation of Families, Support System Designees and Visitor(s) in Care.”

Three additional related policies were also updated to reflect core principles of inclusion and partnership. These included system policies focused on discharge planning; identification of health care proxy, agent, support person and caregiver; and standards of behavior not conducive in a health care setting. As a result of this work, OPCE was invited to remain an active member of the System Policy and Procedure Committee, adding meaningful new perspectives to the clinical and administrative policy management process. Once policies were updated and approved, the SWT focused on educating leaders and teams. Using a diversified strategy, education was provided through various modes, including weekly system-wide internal communication channels, patient experience huddle messages, yearly mandatory topics training, and the incorporation of essential concepts in existing educational courses (classroom and e-learning modalities).

Position Descriptions/Performance Management

The position descriptions/performance management SWT focused its efforts on incorporating patient- and family-centered concepts and language into position descriptions and the performance appraisal process (Table 2). Due to the complex nature of this work, the process required collaboration from key subject matter experts in human resources, talent management, corporate compensation, and labor management. In 2019, Northwell began an initiative focused on streamlining and standardizing job titles, roles, and developmental pathways across the system. The overarching goal was to create system-wide consistency and standardization. The SWT was successful in advising the leaders overseeing this job architecture initiative on the importance of including language of patient- and family-centered care, like partnership and collaboration, and of highlighting the critical role of family members as part of the care team in subsequent documents.

Northwell has 6 behavioral expectations, standards to which all team members are held accountable: Patient/Customer Focus, Teamwork, Execution, Organizational Awareness, Enable Change, and Develop Self. As a result of the SWT’s work, Patient/Customer Focus was revised to include “families” as essential care partners, demonstrating Northwell’s ongoing commitment to honoring the role of families as members of the care team. It also ensures that all employees are aligned around this priority, as these expectations are utilized to support areas such as recognition and performance. Collaborating with talent management and organizational development, the SWT reviewed yearly performance management and new-hire evaluations. In doing so, they identified an opportunity to refresh the anchored qualitative rating scales to include behavioral demonstrations of patient- and family-centered care, collaboration, respect, and partnership with family members.

Website/Signage

Websites make an important first impression on patients and families looking for information to best prepare for a hospital experience. Therefore, the website/signage SWT worked to redesign hospital websites, enhance digital signage, and perform a baseline assessment of physical signage across facilities. Initial feedback on Northwell’s websites identified opportunities to include more patient- and family-centered, care-partner-infused language; improve navigation; and streamline click levels for easier access. Content for the websites was carefully crafted in collaboration with Northwell’s internal web team, utilizing IPFCC’s best practice standards as a framework and guide.

Next, a multidisciplinary website shared-governance team was established by the OPCE to ensure that key stakeholders were represented and had the opportunity to review and make recommendations for appropriate language and messaging about family presence and participation. This 13-person team was comprised of patient/family partners, patient-experience culture leaders, quality, compliance, human resources, policy, a chief nursing officer, a medical director, and representation from the Institute for Nursing. After careful review and consideration from Northwell’s family partners and teams, all participating hospital websites were enhanced as of June 2019 to include prominent 1-click access from homepages to information for “patients, families and visitors,” as well as “your care partners” information on the important role of families and care partners.

Along with refreshing websites, another step in Northwell’s work to strengthen messaging about family presence and participation was to partner and collaborate with the system’s digital web team as well as local facility councils to understand the capacity to adjust digital signage across facilities. Opportunities were found to make simple yet effective enhancements to the language and imagery of digital signage upon entry, creating a warmer and more welcoming first impression for patients and families. With patient and family partner feedback, the team designed digital signage with inclusive messaging and images that would circulate appropriately based on the facility. Signage specifically welcomes families and refers to them as members of patients’ care teams.

Northwell’s website/signage SWT also directed a 2-phase physical signage assessment to determine ongoing opportunities to alter signs in areas that particularly impact patients and families, such as emergency departments, main lobbies, cafeterias, surgical waiting areas, and intensive care units. Each hospital’s local PFPC did a “walk-about”⁹ to make enhancements to physical signage, such as removing paper and overcrowded signs, adjusting negative language, ensuring alignment with brand guidelines, and including language that welcomed families. As a result of the team’s efforts around signage, collaboration began with the health system’s signage committee to help standardize signage terminology to reflect family inclusiveness, and to implement the recommendation for a standardized signage shared-governance team to ensure accountability and a patient- and family-centered structure.

Sustainment

Since implementing Better Together, Northwell has been able to infuse a more patient- and family-centered emphasis into its overall patient experience message of “Every role, every person, every moment matters.” As a strategic tool aimed at encouraging leaders, clinicians, and staff to pause and reflect about the “heart” of their work, patient and family stories are now included at the beginning of meetings, forums, and team huddles. Elements of the initiative have been integrated in current Patient and Family Partnership sustainment plans at participating hospitals. Some highlights include continued integration of patient/family partners on committees and councils that impact areas such as way finding, signage, recruitment, new-hire orientation, and community outreach; focus on enhancing partner retention and development programs; and inclusion of patient- and family-centered care and Better Together principles in ongoing leadership meetings.

Factors Contributing to Success

Health care is a complex, regulated, and often bureaucratic world that can be very difficult for patients and families to navigate. The system’s partnership with the Better Together Learning Community for Hospitals in New York State enhanced its efforts to improve family presence and participation and created powerful synergy. The success of this partnership was based on a number of important factors:

A solid foundation of support, structure, and accountability. The OPCE initiated the IPFCC Better Together partnership and established a synergistic collaboration inclusive of leadership, frontline teams, multiple departments, and patient and family partners. As a major strategic component of Northwell’s mission to deliver high-quality, patient- and family-centered care, OPCE was instrumental in connecting key areas and stakeholders and mobilizing the recommendations coming from patients and families.

A visible commitment of leadership at all levels. Partnering with leadership across Northwell’s system required a delineated vision, clear purpose and ownership, and comprehensive implementation and sustainment strategies. The existing format of Northwell’s PFPC provided the structure and framework needed for engaged patient and family input; the OPCE motivated and organized key areas of involvement and led communication efforts across the organization. The IPFCC coaching calls provided the underlying guidance and accountability needed to sustain momentum. As leadership and frontline teams became aware of the vision, they understood the larger connection to the system’s purpose, which ultimately created a clear path for positive change.

Meaningful involvement and input of patient and family partners. Throughout this project, Northwell’s patient/family partners were involved through the PFPC and local councils. For example, patient/family partners attended every IPFCC coaching call; members had a central voice in every decision made within each SWT; and local PFPCs actively participated in physical signage “walk-abouts” across facilities, making key recommendations for improvement. This multifaceted, supportive collaboration created a rejuvenated and purposeful focus for all council members involved. Some of their reactions include, “…I am so happy to be able to help other families in crisis, so that they don’t have to be alone, like I was,” and “I feel how important the patient and family’s voice is … it’s truly a partnership between patients, families, and staff.”

Regular access to IPFCC as a best practice coach and expert resource. Throughout the 10-month process, IPFCC’s Better Together Learning Community for Hospitals in New York State provided ongoing learning interventions for members of the SWT; multiple and varied resources from the Better Together toolkit for adaptation; and opportunities to share and reinforce new, learned expertise with colleagues within the Northwell Health system and beyond through IPFCC’s free online learning community, PFCC.Connect.

Conclusion

Family presence and participation are important to the quality, experience, safety, and outcomes of care. IPFCC’s campaign, Better Together: Partnering with Families, encourages hospitals to change restrictive visiting policies and, instead, to welcome families and caregivers 24 hours a day.

Two projects within Better Together involving almost 50 acute care hospitals in New York State confirm that change in policy, practice, and communication is particularly effective when implemented with strong support from leadership. An intervention like the Better Together Learning Community, offering structured training, coaching, and resources, can facilitate the change process.

Corresponding author: IPFCC, Deborah L. Dokken, 6917 Arlington Rd., Ste. 309, Bethesda, MD 20814; ddokken@ipfcc.org.

Funding disclosures: None.

From the Institute for Patient- and Family-Centered Care, Bethesda, MD (Ms. Dokken and Ms. Johnson), and Northwell Health, New Hyde Park, NY (Dr. Barden, Ms. Tuomey, and Ms. Giammarinaro).

Abstract

Objective: To describe the growth of Better Together: Partnering with Families, a campaign launched in 2014 to eliminate restrictive hospital visiting policies and to put in place policies that recognize families as partners in care, and to discuss the processes involved in implementing the initiative in a large, integrated health system.

Methods: Descriptive report.

Results: In June 2014, the Institute for Patient- and Family-Centered Care (IPFCC) launched the Better Together campaign to emphasize the importance of family presence and participation to the quality, experience, safety, and outcomes of care. Since then, this initiative has expanded in both the United States and Canada. With support from 2 funders in the United States, special attention was focused on acute care hospitals across New York State. Nearly 50 hospitals participated in 2 separate but related projects. Fifteen of the hospitals are part of Northwell Health, New York State’s largest health system. Over a 10-month period, these hospitals made significant progress in changing policy, practice, and communication to support family presence.

Conclusion: The Better Together initiative was implemented across a health system with strong support from leadership and the involvement of patient and family advisors. An intervention offering structured training, coaching, and resources, like IPFCC’s Better Together initiative, can facilitate the change process.

Keywords: family presence; visiting policies; patient-centered care; family-centered care; patient experience.

The presence of families at the bedside of patients is often restricted by hospital visiting hours. Hospitals that maintain these restrictive policies cite concerns about negative impacts on security, infection control, privacy, and staff workload. But there are no data to support these concerns, and the experience of hospitals that have successfully changed policy and practice to welcome families demonstrates the potential positive impacts of less restrictive policies on patient care and outcomes.¹ For example, hospitalization can lead to reduced cognitive function in elderly patients. Family members would recognize the changes and could provide valuable information to hospital staff, potentially improving outcomes.²

In June 2014, the Institute for Patient- and Family-Centered Care (IPFCC) launched the campaign Better Together: Partnering with Families.³ The campaign is is grounded in patient- and family- centered care, an approach to care that supports partnerships among health care providers, patients, and families, and, among other core principles, advocates that patients define their “families” and how they will participate in care and decision-making.

Emphasizing the importance of family presence and participation to quality and safety, the Better Together campaign seeks to eliminate restrictive visiting policies and calls upon hospitals to include families as members of the care team and to welcome them 24 hours a day, 7 days a week, according to patient preference. As part of the campaign, IPFCC developed an extensive toolkit of resources that is available to hospitals and other organizations at no cost. The resources include sample policies; profiles of hospitals that have implemented family presence policies; educational materials for staff, patients, and families; and a template for hospital websites. This article, a follow-up to an article published in the January 2015 issue of JCOM,¹ discusses the growth of the Better Together initiative as well as the processes involved in implementing the initiative across a large health system.

Growth of the Initiative

Since its launch in 2014, the Better Together initiative has continued to expand in the United States and Canada. In Canada, under the leadership of the Canadian Foundation for Healthcare Improvement (CFHI), more than 50 organizations have made a commitment to the Better Together program and family presence.⁴ Utilizing and adapting IPFCC’s Toolkit, CFHI developed a change package of free resources for Canadian organizations.⁵ Some of the materials, including the Pocket Guide for Families (Manuel des Familles), were translated into French.⁶

With support from 2 funders in the United States, the United Hospital Fund and the New York State Health (NYSHealth) Foundation, through a subcontract with the New York Public Interest Research Group (NYPIRG), IPFCC has been able to focus on hospitals in New York City, including public hospitals, and, more broadly, acute care hospitals across New York State. Nearly 50 hospitals participated in these 2 separate but related projects.

Education and Support for New York City Hospitals

Supported by the United Hospital Fund, an 18-month project that focused specifically on New York City hospitals was completed in June 2017. The project began with a 1-day intensive training event with representatives of 21 hospitals. Eighteen of those hospitals were eligible to participate in follow-up consultation provided by IPFCC, and 14 participated in some kind of follow-up. NYC Health + Hospitals (H+H), the system of public hospitals in NYC, participated most fully in these activities.

The outcomes of the Better Together initiative in New York City are summarized in the report Sick, Scared, & Separated From Loved Ones,² which is based on a pre/post review of hospital visitation/family presence policies and website communications. According to the report, hospitals that participated in the IPFCC training and consultation program performed better, as a group, with respect to improved policy and website scores on post review than those that did not. Of the 10 hospitals whose scores improved during the review period, 8 had participated in the IPFCC training and 1 hospital was part of a hospital network that did so. (Six of these hospitals are part of the H+H public hospital system.) Those 9 hospitals saw an average increase in scores of 4.9 points (out of a possible 11). All of the website communication improvements were related to the designation or role of the family member/care partner, or the patient’s right to choose visitors and family members/care partners, fundamental elements of the Better Together initiative.²

A Learning Community for Hospitals in New York State

With support from the NYSHealth Foundation, IPFCC again collaborated with NYPIRG and New Yorkers for Patient & Family Empowerment on a 2-year initiative, completed in November 2019, that involved 26 hospitals: 15 from Northwell Health, New York State’s largest health system, and 11 hospitals from health systems throughout the state (Greater Hudson Valley Health System, now Garnet Health; Mohawk Valley Health System; Rochester Regional Health; and University of Vermont Health Network). An update of the report Sick, Scared, & Separated From Loved Onescompared pre/post reviews of policies and website communications regarding hospital visitation/family presence.⁷ Its findings confirm that hospitals that participated in the Better Together Learning Community improved both their policy and website scores to a greater degree than hospitals that did not participate and that a planned intervention can help facilitate change.

During the survey period, 28 out of 40 hospitals’ website navigability scores improved. Of those, hospitals that did not participate in the Better Together Learning Community saw an average increase in scores of 1.2 points, out of a possible 11, while the participating hospitals saw an average increase of 2.7 points, with the top 5 largest increases in scores belonging to hospitals that participated in the Better Together Learning Community.⁷

Northwell Health is a large integrated health care organization comprising more than 69,000 employees, 23 hospitals, and more than 750 medical practices, located geographically across New York State. Embracing patient- and family-centered care, Northwell is dedicated to improving the quality, experience, and safety of care for patients and their families. Welcoming and including patients, families, and care partners as members of the health care team has always been a core element of Northwell’s organizational goal of providing world-class patient care and experience.

Four years ago, the organization reorganized and formalized a system-wide Patient & Family Partnership Council (PFPC).⁸ Representatives on the PFPC include a Northwell patient experience leader and patient/family co-chair from local councils that have been established in nearly all 23 hospitals as well as service lines. Modeling partnership, the PFPC is grounded in listening to the “voice” of patients and families and promoting collaboration, with the goal of driving change across varied aspects and experiences of health care delivery.

Through the Office of Patient and Customer Experience (OPCE), a partnership with IPFCC and the Better Together Learning Community for Hospitals in New York State was initiated as a fundamental next step in Northwell’s journey to enhance system-wide family presence and participation. Results from Better Together’s Organizational Self-Assessment Tool and process identified opportunities to influence 3 distinct areas: policy/staff education, position descriptions/performance management, and website/signage. Over a 10-month period (September 2018 through June 2019), 15 Northwell hospitals implemened significant patient- and family-centered improvements through multifaceted shared work teams (SWT) that partnered around the common goal of supporting the patient and family experience (Figure). Northwell’s SWT structure allowed teams to meet individually on specific tasks, led by a dedicated staff member of the OPCE to ensure progress, support, and accountability. Six monthly coaching calls or report-out meetings were attended by participating teams, where feedback and recommendations shared by IPFCC were discussed in order to maintain momentum and results.

Policy/Staff Education

The policy/staff education SWT focused on appraising and updating existing policies to ensure alignment with key patient- and family-centered concepts and Better Together principles (Table 1). By establishing representation on the System Policy and Procedure Committee, OPCE enabled patients and families to have a voice at the decision-making table. OPCE leaders presented the ideology and scope of the transformation to this committee. After reviewing all system-wide policies, 4 were identified as key opportunities for revision. One overarching policy titled “Visitation Guidelines” was reviewed and updated to reflect Northwell’s mission of patient- and family-centered care, retiring the reference to “families” as “visitors” in definitions, incorporating language of inclusion and partnership, and citing other related policies. The policy was vetted through a multilayer process of review and stakeholder feedback and was ultimately approved at a system Performance Improvement Coordinating Group meeting under a new title, “Visitation: Presence and Participation of Families, Support System Designees and Visitor(s) in Care.”

Three additional related policies were also updated to reflect core principles of inclusion and partnership. These included system policies focused on discharge planning; identification of health care proxy, agent, support person and caregiver; and standards of behavior not conducive in a health care setting. As a result of this work, OPCE was invited to remain an active member of the System Policy and Procedure Committee, adding meaningful new perspectives to the clinical and administrative policy management process. Once policies were updated and approved, the SWT focused on educating leaders and teams. Using a diversified strategy, education was provided through various modes, including weekly system-wide internal communication channels, patient experience huddle messages, yearly mandatory topics training, and the incorporation of essential concepts in existing educational courses (classroom and e-learning modalities).

Position Descriptions/Performance Management

The position descriptions/performance management SWT focused its efforts on incorporating patient- and family-centered concepts and language into position descriptions and the performance appraisal process (Table 2). Due to the complex nature of this work, the process required collaboration from key subject matter experts in human resources, talent management, corporate compensation, and labor management. In 2019, Northwell began an initiative focused on streamlining and standardizing job titles, roles, and developmental pathways across the system. The overarching goal was to create system-wide consistency and standardization. The SWT was successful in advising the leaders overseeing this job architecture initiative on the importance of including language of patient- and family-centered care, like partnership and collaboration, and of highlighting the critical role of family members as part of the care team in subsequent documents.

Northwell has 6 behavioral expectations, standards to which all team members are held accountable: Patient/Customer Focus, Teamwork, Execution, Organizational Awareness, Enable Change, and Develop Self. As a result of the SWT’s work, Patient/Customer Focus was revised to include “families” as essential care partners, demonstrating Northwell’s ongoing commitment to honoring the role of families as members of the care team. It also ensures that all employees are aligned around this priority, as these expectations are utilized to support areas such as recognition and performance. Collaborating with talent management and organizational development, the SWT reviewed yearly performance management and new-hire evaluations. In doing so, they identified an opportunity to refresh the anchored qualitative rating scales to include behavioral demonstrations of patient- and family-centered care, collaboration, respect, and partnership with family members.

Website/Signage

Websites make an important first impression on patients and families looking for information to best prepare for a hospital experience. Therefore, the website/signage SWT worked to redesign hospital websites, enhance digital signage, and perform a baseline assessment of physical signage across facilities. Initial feedback on Northwell’s websites identified opportunities to include more patient- and family-centered, care-partner-infused language; improve navigation; and streamline click levels for easier access. Content for the websites was carefully crafted in collaboration with Northwell’s internal web team, utilizing IPFCC’s best practice standards as a framework and guide.

Next, a multidisciplinary website shared-governance team was established by the OPCE to ensure that key stakeholders were represented and had the opportunity to review and make recommendations for appropriate language and messaging about family presence and participation. This 13-person team was comprised of patient/family partners, patient-experience culture leaders, quality, compliance, human resources, policy, a chief nursing officer, a medical director, and representation from the Institute for Nursing. After careful review and consideration from Northwell’s family partners and teams, all participating hospital websites were enhanced as of June 2019 to include prominent 1-click access from homepages to information for “patients, families and visitors,” as well as “your care partners” information on the important role of families and care partners.

Along with refreshing websites, another step in Northwell’s work to strengthen messaging about family presence and participation was to partner and collaborate with the system’s digital web team as well as local facility councils to understand the capacity to adjust digital signage across facilities. Opportunities were found to make simple yet effective enhancements to the language and imagery of digital signage upon entry, creating a warmer and more welcoming first impression for patients and families. With patient and family partner feedback, the team designed digital signage with inclusive messaging and images that would circulate appropriately based on the facility. Signage specifically welcomes families and refers to them as members of patients’ care teams.

Northwell’s website/signage SWT also directed a 2-phase physical signage assessment to determine ongoing opportunities to alter signs in areas that particularly impact patients and families, such as emergency departments, main lobbies, cafeterias, surgical waiting areas, and intensive care units. Each hospital’s local PFPC did a “walk-about”⁹ to make enhancements to physical signage, such as removing paper and overcrowded signs, adjusting negative language, ensuring alignment with brand guidelines, and including language that welcomed families. As a result of the team’s efforts around signage, collaboration began with the health system’s signage committee to help standardize signage terminology to reflect family inclusiveness, and to implement the recommendation for a standardized signage shared-governance team to ensure accountability and a patient- and family-centered structure.

Sustainment

Since implementing Better Together, Northwell has been able to infuse a more patient- and family-centered emphasis into its overall patient experience message of “Every role, every person, every moment matters.” As a strategic tool aimed at encouraging leaders, clinicians, and staff to pause and reflect about the “heart” of their work, patient and family stories are now included at the beginning of meetings, forums, and team huddles. Elements of the initiative have been integrated in current Patient and Family Partnership sustainment plans at participating hospitals. Some highlights include continued integration of patient/family partners on committees and councils that impact areas such as way finding, signage, recruitment, new-hire orientation, and community outreach; focus on enhancing partner retention and development programs; and inclusion of patient- and family-centered care and Better Together principles in ongoing leadership meetings.

Factors Contributing to Success

Health care is a complex, regulated, and often bureaucratic world that can be very difficult for patients and families to navigate. The system’s partnership with the Better Together Learning Community for Hospitals in New York State enhanced its efforts to improve family presence and participation and created powerful synergy. The success of this partnership was based on a number of important factors:

A solid foundation of support, structure, and accountability. The OPCE initiated the IPFCC Better Together partnership and established a synergistic collaboration inclusive of leadership, frontline teams, multiple departments, and patient and family partners. As a major strategic component of Northwell’s mission to deliver high-quality, patient- and family-centered care, OPCE was instrumental in connecting key areas and stakeholders and mobilizing the recommendations coming from patients and families.

A visible commitment of leadership at all levels. Partnering with leadership across Northwell’s system required a delineated vision, clear purpose and ownership, and comprehensive implementation and sustainment strategies. The existing format of Northwell’s PFPC provided the structure and framework needed for engaged patient and family input; the OPCE motivated and organized key areas of involvement and led communication efforts across the organization. The IPFCC coaching calls provided the underlying guidance and accountability needed to sustain momentum. As leadership and frontline teams became aware of the vision, they understood the larger connection to the system’s purpose, which ultimately created a clear path for positive change.

Meaningful involvement and input of patient and family partners. Throughout this project, Northwell’s patient/family partners were involved through the PFPC and local councils. For example, patient/family partners attended every IPFCC coaching call; members had a central voice in every decision made within each SWT; and local PFPCs actively participated in physical signage “walk-abouts” across facilities, making key recommendations for improvement. This multifaceted, supportive collaboration created a rejuvenated and purposeful focus for all council members involved. Some of their reactions include, “…I am so happy to be able to help other families in crisis, so that they don’t have to be alone, like I was,” and “I feel how important the patient and family’s voice is … it’s truly a partnership between patients, families, and staff.”

Regular access to IPFCC as a best practice coach and expert resource. Throughout the 10-month process, IPFCC’s Better Together Learning Community for Hospitals in New York State provided ongoing learning interventions for members of the SWT; multiple and varied resources from the Better Together toolkit for adaptation; and opportunities to share and reinforce new, learned expertise with colleagues within the Northwell Health system and beyond through IPFCC’s free online learning community, PFCC.Connect.

Conclusion

Family presence and participation are important to the quality, experience, safety, and outcomes of care. IPFCC’s campaign, Better Together: Partnering with Families, encourages hospitals to change restrictive visiting policies and, instead, to welcome families and caregivers 24 hours a day.

Two projects within Better Together involving almost 50 acute care hospitals in New York State confirm that change in policy, practice, and communication is particularly effective when implemented with strong support from leadership. An intervention like the Better Together Learning Community, offering structured training, coaching, and resources, can facilitate the change process.

Corresponding author: IPFCC, Deborah L. Dokken, 6917 Arlington Rd., Ste. 309, Bethesda, MD 20814; ddokken@ipfcc.org.

Funding disclosures: None.