Nothing About Patients Without Patients: More Than Just a Catchphrase!

Abstract

Health care is sometimes called a “team sport,” yet patients were traditionally not considered to be “on the team” in medicine. In 2001, the Institute of Medicine (now National Academy of Medicine) published its seminal book Crossing the Quality Chasm, in which patient-centered care was identified as 1 of 6 quality aims. Many organizations have since included patient-centered care as an important aspect of quality, including The Joint Commission, Centers for Medicare and Medicaid, and many large employers. In the past 10 years, the focus on patient-centered care has expanded in the Kaiser Permanente, Southern California region to include innovative ways for patients to collaborate with health care teams to codesign improvement efforts that are truly patient-centered. We will describe 3 important approaches that have greatly increased the patient-centeredness of our organization: individual patient approaches; adding patients onto health care teams; and effectively utilizing patient and family advisory councils. We will provide examples of how all health care organizations can better partner with their patients to improve their ability to provide higher quality, safer, more equitable, and affordable health care. The slogan “Nothing About Patients Without Patients” was an early rallying cry of the patient engagement movement. It conveyed the idea that as with everything else in our society, patients now expect to have a say in the design and implementation of their care. We show that this is not only possible, but also highly effective and even necessary to improving care.

Introduction

Every year Kaiser Permanente Southern California performed thousands of colonoscopies, and it was not uncommon for many to be rescheduled due to inadequate bowel preparation by the patient. In addition, there were frequent questions from patients and their caregivers about the procedure and how to prepare, which required time and effort to answer. In 2016, regional gastroenterology leaders decided to standardize patient colonoscopy preparation instructions, which had been developed separately at each of the 13 Kaiser Permanente Southern California medical centers. A team of physicians, pharmacists, nurses, and others developed what they thought would be effective standardized instructions. They brought them to the Kaiser Permanente Southern California Regional Patient Advisory Council (RPAC) “for approval.” This monthly meeting of patient representatives from each of the 13 Kaiser Permanente Southern California medical centers provides patient perspectives to improvement projects in the region; these patients also volunteer their time on their local medical center Patient and Family Advisory Councils (PFACs).

The RPAC helped the gastroenterology team identify many substantial omissions and confusing language in the draft tool. For example, there was no mention of how patients with diabetes should adjust medications, and there were inconsistencies between units of measure. After meeting with RPAC several more times, the team redesigned the tool, making instructions for colonoscopies for more than 4 million Kaiser Permanente Southern California members more effective and patient-centered. Feedback from these leaders indicated that the RPAC input helped reduce the rate of incomplete preparations and repeat colonoscopies, and they expressed their appreciation for the value of early collaboration with members to codesign important patient-facing communications.

Background

Health care is sometimes called a “team sport,” yet patients are usually not considered to be ”on the team.” When the Institute of Medicine (now the National Academy of Medicine) published its seminal book Crossing the Quality Chasm in 2001, patient-centered care was identified as 1 of 6 quality aims. ¹ Many organizations have included patient-centered care as an important aspect of quality, including The Joint Commission, Centers for Medicare and Medicaid, and many large employers. Still, the patient voice is rarely included in efforts to improve health care quality. Initially, patient-centered care focused on improving the care of the individual patient. This included, for example, encouraging clear communication and transparency after medical errors. ² In the past 20 years, patient-centered care has expanded to include many innovative ways for patients to partner with health care teams, allowing diverse patient perspectives to inform improvement efforts that are truly patient-centered.

We will focus on 3 approaches to patient engagement that have been particularly useful in our work to improve care for the 4.9 million members of Kaiser Permanente Southern California: improving partnerships with individual patients; embedding patients on committees, workgroups, improvement teams, and so forth; and implementing effective PFACs.

Individual Patient Approaches

Recent innovations, such as easy access to clinician progress notes that are now viewable online for most patients, allow those patients to see high-quality information about their health, improving adherence and safety. ³ In addition, many specialty guidelines require shared decision-making; patients not only become active participants in their health care decisions, but their health outcomes also improve. ⁴ The increased availability of accurate online information about medical conditions encourages patient involvement in their own care by reducing the information hierarchy, which can make medicine seem incomprehensible. As one example of ways to better engage patients in their own care, we recently created a video educational tool that encourages those patients to consider themselves as “the most important member of the health care team.” There are also recommendations on how to best partner with their clinicians to prepare for and follow up after their visits. ⁵ In addition, the Kaiser Permanente “Online Personal Action Plan” (individualized recommendations on the kp.org patient portal for every patient based on their health profile, chronic medical conditions, etc) was extensively redesigned with input from the RPAC patient advisors. Their perspectives led to improved patient engagement for all Kaiser Permanente Southern California members who use the Kaiser Permanente portal (currently approximately 80%).

Adding Patients to the Health Care Team

There are many ways that patients can collaborate with health systems to lead to better care. These include participation on health care committees, improvement teams, and research—as well as at conferences and other venues—to share patient perspectives that can lead to more patient-centered improvement. At Kaiser Permanente Southern California, patients have worked to codesign a wide variety of innovative projects and participate regularly on more than 100 important teams across the region, including care experience, equity/inclusion/diversity, and quality committees. They have added their perspectives in hundreds of conferences, meetings, and other venues. For example, the Kaiser Permanente Southern California COVID-19 operations group has collaborated repeatedly with engaged patients to codesign patient-centered online COVID-19 communications, tools, and workflows. Patients on the regional care experience committee helped highlight the importance of environmental services staff for exceptional inpatient care experience. Meanwhile, patients on the Kaiser Permanente Southern California diagnostic excellence project assisted in developing tools that allow patients and clinicians to work together to better identify an accurate diagnosis. The perspectives of those with non–medically trained “outside eyes” help focus work on what is important to members.

PFACs

In the United States, PFACs started in the early 1980s, when parents lobbied pediatric hospitals for longer visiting hours and more psychosocial support for children. ⁶ Initially, PFACs focused on patient complaints or sought a “stamp of approval” for programs that had already been designed by health care teams. Over the past 2 decades, many PFACs have evolved to become more meaningful collaborations with health care organizations on a variety of strategic projects. Over half of US hospitals report having a PFAC, which is usually composed of 5–20 patient and family member volunteers who meet regularly to address quality/safety, care experience, and other organizational priorities. ⁷ Patient perspectives frequently contribute to this work from an early stage, improving patient-centeredness and reducing the need for rework. Only 1 US state, Massachusetts, requires that all hospitals have a PFAC. Although it is not mandated within Kaiser Permanente, over the past 15 years, PFACs have evolved in most of its medical centers, using a variety of approaches and with varying levels of effectiveness. There are currently 92 PFACs across Kaiser Permanente. These include almost 1200 patient advisors who volunteer their time to improve care across many different patient care areas, from “general” PFACs to those that focus on specific topics.

At Kaiser Permanente Southern California, there are 24 PFACs, with 1 at each of its 13 medical centers along with regional PFACs, to address specific issues. These include behavioral health, transplant care, nephrology care, neonatal intensive care unit parent issues, and the concerns of those patients who speak Spanish, for which there are 2 PFACs. An important focus has been to create councils that reflect the diversity of our patient population.

Effective PFAC Strategies

In the last few years, we have promulgated several strategies that improve the effectiveness of PFACs. These include having physician, Kaiser Permanente Health Plan, and patient PFAC co-leads; providing adequate PFAC administrative support; ensuring effective identification and onboarding of new patient advisors; providing formal PFAC annual reports to executive sponsors; creating standardized processes to prepare for, lead, and follow up after meetings; and standing up a Kaiser Permanente Southern California PFAC community of practice in which insights and challenges are shared by Kaiser Permanente and patient PFAC leaders. Identifying patients who are a good fit for a particular PFAC involves several strategies, such as conducting outreach to physicians, other leaders, and patients to bring in the voices of patient demographics who are not currently on the council; being transparent and fair with selection processes to identify good candidates for a council with patient co-leads participating in the decisions; and establishing clear council “group norms” developed by the PFAC that encourage a productive atmosphere in which members commit to listening to others’ perspectives in a respectful environment.

We try to ensure that PFAC work is meaningful both for those in the health care organization and for patients volunteering their time to improve care. This requires the selection of PFAC agenda topics that are important to members—ensuring that meetings are effective and diverse viewpoints welcomed—and systematically gathering feedback about the changes made by Kaiser Permanente improvement leaders based on PFAC input to allow patient advisors to gauge the effectiveness of their contributions. This PFAC infrastructure has improved hundreds of projects through collaborations with patients and family members in Kaiser Permanente Southern California over the last 10 years. A few examples include:

1. The printed appointment reminder cards sent to all patients before prebooked office visits (< 800,000 mailed monthly) had a blank page. A PFAC brought up the possibility of adding a useful message to the card. In response, a section was added to help patients better prepare for their visit, along with space for patients to write their main concerns. This became a resource that has been embraced by many Kaiser Permanente Southern California patients and that would likely otherwise still be a blank page without PFAC collaboration. The outcome was improved patient satisfaction and better communication with clinicians.

2. New direct-to-patient texting programs were initiated for surgical and emergency department patients in the last few years. The content, timing, and number of text messages to patients were modified based on RPAC patient input. The outcome was that the Kaiser Permanente leaders involved felt this collaboration with members substantially improved the effectiveness of these programs.

3. Kaiser Permanente Southern California faced many challenges related to the COVID-19 pandemic that placed its Centers for Medicare & Medicaid Services 5-star rating in jeopardy. Kaiser Permanente Southern California Care Coordination leaders worked closely with our RPAC on several areas that impact this measure. The outcome was that these leaders acknowledged that this collaboration contributed to the preservation of Kaiser Permanente Southern California’s 5-star rating in 2022.

4. Kaiser Permanente Southern California did not have a regional “caller ID” system, which meant that patients frequently ignored important calls when their phone indicated “no caller ID.” This had not been “on the radar” of the organization until the issue was brought to senior Kaiser Permanente Southern California leaders by the RPAC. They were able to address this issue by making Kaiser Permanente Southern California a pilot for a national Kaiser Permanente caller ID initiative. The outcome was greatly improved communication with members and improved scheduling and reduced frustration for Kaiser Permanente staff and patients alike.

In addition to direct work to improve the care provided by Kaiser Permanente Southern California, patients from Kaiser Permanente Southern California PFACs have shared perspectives on the value of patient engagement in many local and national settings. Examples include the Institute for Healthcare Improvement, the Beryl Institute, and organizations such as the National Alliance for Mental Illness, in which patients shared best practices and lessons learned with the greater health care community.

The Importance of Executive Sponsorship of Patient- and Family-Centered Care

A key component of effective PFACs is executive leadership support. Without this, many PFACs struggle to address organizational strategic initiatives and can lack impact. At Kaiser Permanente Southern California, top leaders have made it clear that partnering with patients is valuable and expected. Ramin Davidoff, the executive medical director of Kaiser Permanente Southern California, together with the Kaiser Foundation Health Plan/Hospital region president, meet regularly with the RPAC to hear patient perspectives on areas that need improvement. They communicate the value of patient engagement to regional leaders and refer key improvement teams and leaders to PFACs and other venues to help them better understand members’ perspectives about Kaiser Permanente Southern California care and how to improve it.

Conclusion

It has been 22 years since the publication of Crossing the Quality Chasm. We believe it is time to view patients as partners and as a cost-effective, transformational resource for delivering high-quality, patient-centered care. In today’s difficult health care environment, who can afford to waste valuable health care resources? Partnering with patients to improve care individually, on health care teams, and via PFACs makes our health care, and caring, better. “Nothing about patients without patients” is not just a catchy saying. It is also a guiding principle that yields many dividends for better quality, safety, and care experience. We urge all health care leaders and organizations to “cross the quality chasm” with patients by their sides, as integral partners of their health care teams.