Elevating Patient Voices in Your Clinic

In December, at Dr. Caroline Fife’s urging, I drew on my experience as a patient/family advisor (PFA) at Maryland’s Suburban Hospital, part of Johns Hopkins Medicine (JHM), to write about the importance of patient and family voices in health care. Today, I offer some tips on starting a patient and family advisory council (PFAC) in your clinic.
 
Research shows that having engaged patients reduces errors and the risk of malpractice, as well as increases patient loyalty and employee satisfaction. A PFAC is a partnership between staff, clinicians, and volunteer patients and family members, who offer important feedback, insights, and advice to improve healthcare outcomes. The most effective PFACs include at least an equal number of PFAs and staff, including senior executives, leading clinicians, and representatives from marketing and community relations. The PFAs should reflect the diversity in the communities the clinic serves.
 
Hospital PFACs have formal mission statements, bylaws, annual goals, leadership structures, monthly meetings, and so on. In smaller settings, one option is to hold quarterly “cafés” with patients and families.
 
There are pros and cons to each approach. Co-chaired by a PFA and staff member, a PFAC is consistent and helps support the overall patient- and family-centered care commitment of your organization. At JHM, PFAs sit on dozens of hospital committees, including patient safety and quality committees. In fact, a PFA sits on JHM’s Board of Trustees’ Patient Safety and Quality Committee.
 
Beyond participating in regular meetings, PFAC members often perform hands-on work. For example, at Suburban Hospital, PFAs created the hospital’s first patient handbook and established a Patient and Family Resource Center, staffed by volunteers. PFA sit on dozens of hospital committees, including most nursing councils. It takes on such special projects as implementing bedside shift reports and multidisciplinary rounding. We were involved in the design of and signage for the new hospital wing. We review and, at times, revise written policies, patient education materials, systemwide COVID policies and in-patient visitation policies, and more.
 
Suburban’s PFAC was valuable when COVID-19 hit. In early March 2020, the hospital’s president came to us to discuss how the institution should interact with patients and families during the public health emergency. Two years later, led by JHM’s patient-experience executive, the systemwide PFAC continues to help design an evolving tiered system that now allows care partners to join patients in the emergency department, intensive care unit, at the bedside and in ambulatory offices, even during the Omicron wave.
 
Held either quarterly or on an ad hoc basis and facilitated by a staff member, cafés are in the style of marketing focus groups. They allow you to learn from the specific sub-communities you serve—for example, patients who are deaf or blind, elderly or teenaged, LGBTQ+, or non-English speaking. During a café, 10 to 20 patients and family members sit at a conference table (or via Zoom) and respond to questions. Cafés do not enable you to build strong, long-term, trusting relationships with your PFAs. In addition, if you need immediate feedback, it takes a lot longer to bring patients together for a café than it would to meet with the members of an ongoing PFAC.

Five Steps to Establish an Engaged PFAC

1.    Ensure Senior Management is on Board
Commit yourself to being a PFAC champion and establish support from the highest levels of your organization. At the same time, share information across the organization about how important listening to and learning from patients’ experiences will be to your clinic. At Suburban, the chief nursing officer is a PFAC co-chair and the president is a member.
 
2.    Establish a Planning Team
Gather a small, enthusiastic and diverse group of administrative and clinical staff as well as one or two patients/family members to begin planning the PFAC and recruiting more PFAs. It is always best to partner with patients/family members early in the process. Establish your goals and objectives. Identify someone to serve as an administrator or project manager to schedule meetings, keep track of activities, and so on.
 
3.    Recruit Patients and Family Members
Start by asking doctors, nurses and other front-line staff to identify patients and family members who have had useful, insightful and interesting recommendations or comments in the past. The PFAs on your planning committee should look to their community networks for appropriate people. Personally ask patients to help you improve your clinic.
 
Reach out to a wider audience: post a flyer or distribute postcards asking patients and family members to apply to become a PFAC member; put a notice on your EHR portal, and in newsletters and other marketing materials. Leverage your marketing department.
 
4.    Vet Candidates
PFAs are recent patients or their family members and should be diverse, reflecting the patients you serve. Good PFAs take their roles as advisors seriously and respectfully.
 
PFAs should go through the same process any volunteers might, including attending an introductory orientation, signing non-disclosure and HIPAA compliance statements, and so on.
 
5.    Launch Your PFAC
Once you have identified around 10 each of staff and volunteers, schedule a meeting during which they partner to decide:
·      What structure will your PFAC have?
o   How many members: staff/volunteers?
o   How often will you meet?
o   What time will you meet, considering volunteer and staff schedules?
o   Who will create a “job description” for PFAs?
o   Who will write the bylaws and so on?
o   Will you serve dinner or a snack?
·      PFAs should elect the PFA co-chair(s)
·      What are your goals?
·      What will your first project be? What issues would you like the PFAC to address? (See ideas below)
·      How will you recruit staff and volunteers?
·      How will you continue to engage senior staff, community affairs, patient experience, marketing and other departments for support?
·      How will you evaluate your success?

Possible Topics for Discussion With the PFAC

1.    Written materials: Are your written materials—forms, after-visit summaries, healthcare education one-sheets, pamphlets and videos on specific conditions, procedures or treatments—straightforward and easy to understand? Are they written in plain English? Discussing these materials with PFAs while they are being developed can make a huge difference to patient understanding and compliance. PFAs can also help you navigate 21st century sensibilities, such as using gender neutral language.
 
Like most professionals, health care providers are often so involved in their specialties that they don’t realize how difficult it is for the layperson to understand their jargon. How sentence structure, design elements, and the order information is presented can impact whether the average patient will understand the material. Providers also need to remember that most of their patients are not as well educated as they are, English may not be their first (or even second) language, and/or they may be so stressed that they cannot absorb what they are reading or being told. PFAs can help create readable and usable documents.
 
2.    Internet presence: Is your electronic health record (EHR) portal accessible? Is your website easy to navigate?
 
3.    Ease of visiting your practice: Review the whole process of making appointments and coming to the practice.
 
4.    Address adverse events: Explain internal processes and procedures.
 
5.    Workplace safety: Garner PFAC perspectives on communicating non-violence in the clinic.
 
6.    Discuss possible changes: Review communications, structural or billing changes you are considering.
 
7.    Inclusiveness: Can deaf, blind, elderly, LGBTQ+ and non-English speaking patients navigate your systems easily? Your PFACs could create cafés specifically for these groups and for those with specific conditions (such as diabetic foot problems).
 
8.    New staff: Invite PFA leaders to interview candidates for new senior staff positions. At JHM and Suburban, PFAs participate in the hiring process at the highest levels.
 
Health care improves when everyone works together. A PFAC is not an isolated project. Patient voices should be woven into the fabric of the practice. Below is a list of organizations’ websites that offer tools to start and lead a PFAC. In fact, the American Medical Association (AMA) offers a course about how to establish a PFAC.
 
As I write, we’re in the throes of the Omicron wave of the COVID pandemic. At a time when members of some administrative staffs are being retrained to directly support patients, it may seem odd to start a patient and family advisory council. But, in truth, establishing strong partnerships with patients and their families can help soften the blow of unexpected challenges and improve health care outcomes.
 
Vicki Stearn, a communications consultant, is the Patient Co-Lead of Johns Hopkins Medicine’s Patient and Family Clinical Community, and member of Suburban Hospital’s Patient and Family Advisory Council, in Bethesda, Maryland. This article reflects her personal experiences and draws on language and theories developed by the Institute for Patient and Family Centered Care (IPFCC).

Click here to download a PDF of this article.

Resources to learn more about establishing a patient and family advisory council:
 
Agency for Healthcare Research and Quality (AHRQ). Working With Patients and Families as Advisors: Implementation Handbook. 

AARP. Patient and Family Advisory Councils in Hospitals: Building Partnerships to Improve Care.

American Academy of Family Physicians (AAFP). Patient Advisory Councils: Giving Patients a Seat at the Table.
 
American Medical Association (AMA). Forming a Patient and Family Advisory Council.
 
The Beryl Institute. Patient and Family Advisory Council: Getting Started Tool Kit.
 
Institute for Patient and Family Centered Care (IPFCC). What is patient- and family-centered care?
 
Johns Hopkins Medicine. Patient and Family Advisory Councils.
 
Maryland Healthcare Commission. Patient and Family Advisory Council Guide for Ambulatory Practices.
 
Patient and Family Centered Care Partners
 
Patient-Centered Outcomes Research Institute PFACs Engagement in Research. Building knowledge of how patient-family advisory councils (PFACs) engage with patient-centered outcomes research (PCOR).
 
Planetree
 
Suburban Hospital. PFAC Annual Report.

Vanderbilt Health. Patient and Family Advisory Councils.