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New Breed Patient, Family Advisors Move Health Care, not Flower Pots

Posted By Administration, Thursday, May 07, 2015
Updated: Wednesday, May 06, 2015

For more than a decade, hospitals have been establishing volunteer patient and family advisory councils as useful sounding boards. Today, a small but growing number of institutions are including patients and families more broadly in shaping the delivery of care.

by Stephen Littlejohn, MA, MBA


Don’t ask Kim Blanton, one of the new breed of hospital patient and family advisors, where to put the flower pots. Politely, she will say she doesn’t care. Instead, she told last week’s National Patient Safety Foundation (NPSF) Annual Congress, “Give advisors meaningful work meeting a true need.”


For more than a decade, hospitals have been establishing volunteer patient and family advisory councils. Most function as useful sounding boards, providing feedback on brochures, commenting on building designs, adjusting form language, assisting with patient satisfaction programs, and arranging flower pots.


   From left: Beth Daley Ullem, Chrissie Blackburn,
and Kim Blanton on stage at the 17th Annual
NPSF Patient Safety Congress

Meanwhile, consistent with NPSF recommendations, a small but growing number of institutions are now including patients and families more broadly in shaping the delivery of care. These advisors sit on safety committees, assist root-cause-analysis teams, participate in clinical redesign initiatives, support quality improvement projects, and serve on governing boards.


When North Carolina’s Vidant Health asked Blanton to be an advisor five years ago, her first meeting was about end-of-life care. Since then, she has interviewed candidates for senior positions like chief medical officer and worked on reducing heart failure readmissions. As a long-time cardiac patient, Blanton brought a unique perspective to the development of a transitional program that helps patients care for themselves at home.


Advisors on Staff

Increasingly, hospitals are even hiring advisors, as University Hospitals Case Medical Center in Cleveland did when it appointed parent Chrissie Blackburn as its first principal advisor on patient and family engagement. Blackburn, who also addressed the Congress, is the creator of the ETeam® program, a communications tool for point-of-care patient and family engagement. Reporting directly to the chief executive officer, she has been piloting the program in several units and is currently developing a module for hospital-acquired infections.


In 2008, Children’s Mercy Hospital in Kansas City hired parents Sheryl Chadwick and DeeJo Miller as family centered care coordinators. Seven years later, Children’s Mercy has more than 300 advisors embedded on committees, task forces, and teams throughout the hospital.


Chadwick and Miller attribute the broad involvement of advisors to a 2012 policy change “placing patients and families at the center of decision making.” By 2014, the number of participating advisors had more than doubled.


Leading a Congress workshop, they reported a parent saying she “feels like a peer on the team.” Last year, the Caregiver Action Network ranked Children’s Mercy among the nation’s top 25 organizations for patient and family engagement best practices.


Similarly, Vidant Health is doing more than sponsoring a top-level advisory council, according to Blanton. “Advisors partner with care units on the front lines, working with staff, going to meetings, and participating in rounds.”


During the 10 years she has received care and provided advice, Blanton says she has seen progress. “It’s a whole lot better. There are 150 advisors like me, helping to make it better,” she explained. Vidant fully integrates advisors on teams and committees, engages patients, and includes advisors on root-cause-analysis teams. Last year, the health system reviewed its extensive patient engagement experience, dating from 2000, during a recorded North Carolina Network Consortium online event (see Engaging Community: Patient Advisory Councils.)

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Transparency: Engagement’s Frontier

Both Children’s Mercy and Vidant Health provide advisors with training, especially on the importance of maintaining patient confidentiality. Still, engaging so many advisors on a daily basis, from the C-Suite to the front lines, requires a strong commitment to transparency.


In fact, the level of that commitment defines patient engagement’s frontier.


Hospitals and health systems are beginning to add patient and family representatives to their boards. However, some are only doing so up to a point. One asked its patient representative to leave when discussing adverse events, according to Beth Daley Ullem, a parent who joined Blanton and Blackburn on the NPSF Congress stage.


Ullem, who works with boards on improving patient safety, said there is “such a gap in the information patients are given. There is such variability on outcomes, but patients are unable to access outcomes and safety data. To get to value based health care we need outcomes and pricing transparency.”


In fact, the most recent report of the NPSF Lucian Leape Institute, Shining a Light: Safer Health Care Through Transparency, called for “extreme honesty with patients and their families from start to finish.” The report, distributed to all Congress participants, concluded that the “current status of transparency between clinicians and patients in most organizations is less than optimal.”


Apologize, Disclose, Resolve

When failures in care result in harm, the report advises clinicians to embrace apology, disclosure, and early resolution. Presenting a successful model at the Congress was the Massachusetts Alliance for Communication and Resolution following Medical Injury. Also making progress in this area are the University of Michigan Health System and the University of Illinois Medical Center at Chicago.


Although the report recommends involvement of willing patients and family in root cause analyses of medical errors, it does acknowledge the practice merits further discussion, experimentation, and research. In fact, the practice could turn out to be controversial, judging by comments from the Michigan Health and Hospital Association Keystone Center during a Congress presentation.


The Center is coordinating an initiative among the state’s hospitals to increase patient and family engagement. Kicked off in October 2013, with a white paper, the effort now involves networking activities, leadership engagement, materials development, and a measurement process. The latter includes patient, family, or caregiver participation in root cause analysis.

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Two Decades of Progress

Still, the patient safety movement has made considerable progress on patient and family engagement since October 1996, when the NPSF debuted at the first Annenberg Center patient safety conference in Rancho Mirage, California.


The Foundation officially got under way shortly thereafter on January 1, 1997, began work on a research grant program and concluded the year by announcing a survey finding 100 million Americans had been touched by medical error as patient, family or friend. Meanwhile, the Joint Commission implemented a new “accreditation watch” program for institutions experiencing a major error or near miss.


“The initiatives were good,” Linda Golodner told USA Today, but “doctors must start treating patients with respect for real change to take place.” Then the president of the National Consumers League, Golodner added that patients would detect some problems on their own if they had more information.


Now, with more information, patients and families are doing more than detecting problems. They are part of the solution.


Are you a patient involved in advancing quality and safe care? Comment on this post below.

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Stephen Littlejohn, MA, MBA, is principal of Climb the Curve Communications, LLC, and a former NPSF Board of Directors member and Communications Committee chair. 


Tags:  PFAC  Voice of the Patient 

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