I.       Introduction

Since the first Patient and Family Advisory Councils (PFACs) were started in the 1980s, more than 1,800 hospitals have launched a PFAC, according to the American Hospital Association. In Massachusetts, PFACs are mandated. Yet, in 2022, about 50 percent of hospitals still had not adopted a PFAC. Generally, PFACs are comprised of 5 to 15 patients and family members, who meet periodically with hospital staff to provide feedback and input on a wide range of issues, which could include improving the patient experience, increasing safety and enhancing the quality of care.

GRHealth defines a patient and family advisor: “Any role that enables patients and families to have direct input and influence on the policies, programs and practices that affect the care and services individuals and their families receive.” The PFAC impact is legendary among supporters — providing feedback and input on a wide range of issues to help improve the patient experience. Yet, there are many who still don’t embrace the value of PFACs, also known as Patient Advisory Councils (PACs).

There seems to be reluctance to including patients’ valuable viewpoints. So I set out to prove that patients can have a positive impact on the bottom-line, building a business case for PFACs.

For over a year, I gathered examples of where PFACs have saved hospitals money. However, I found that the amount of money was difficult to quantify. Patient satisfaction feedback through Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) surveys has financial ramifications; however, I was looking for specific patient generated ideas that have been implemented and resulted in financial savings.

A number of institutions produce annual reports containing a description of each project. Many of these reports are available online. I poured over tons of documents, finding few metrics and little data on PFACs’ financial impact on hospitals.

After distributing a survey on PFACs and concluding the first phase of my research in March 2014, I decided to contact the CEOs at hospitals that don’t have a PFAC and ask why not in a second survey in November 2014. The results of both of these surveys are included in this document. I found that, not only are hospitals saving money, but they are improving safety, as well as enhancing the patient experience.

My hope is that eventually, all hospitals in the U.S. and the world are listening to the voice of the patient and the family member through a PFAC.

Barbara Lewis, MBA

Founder

Joan’s Family Bill of Rights

[email protected]

www.JoansFamilyBillOfRights.com

II.     The PFAC Start-up

Laying the groundwork for starting a PFAC is important. Here are some suggestions.

A.  Leadership Support

Leadership support for the PFAC program is critical. Without leadership backing, a PFAC program will be difficult at best and may fail. Even a grassroots movement started by staff may flounder unless they can prove to leadership that a PFAC program is in the best interest of the hospital, won’t cost money and, in fact, may even save money for the hospital.

The following questions as part of a feasibility study will help gauge the level of leadership support.

1. How supportive is leadership in responding to patient complaints?
2. Has leadership created a robust process for handling patient complaints?
3. Does leadership create an environment in which patients and families feel supported enough to speak freely?
4. Is this an environment where patients and families participate in their care?
5. Is this an environment where patients’ and families’ opinions are respected?
6. Does leadership believe that patients and families bring a perspective that no one else can provide?
7. Does leadership believe that patients and family members can look beyond their own experience and issues?
8. Does leadership believe that patients and family members can have a positive impact on the hospital?
9. Does leadership value the opinion of the patient and family member?
10. How supportive is leadership in starting a PFAC?

Questions are answered using 1 through 5 with 1 indicating a low score and 5 indicating a high score. The top score possible is 50. The total scores reflect the following:  

< 25 – Leadership needs to be more supportive before a PFAC is implemented

26-40 – Leadership is primed for a PFAC; needs more info on benefits

41-50 – Leadership is ready for PFAC implementation

If you would like to use a computer model for this task, please email me and I’ll send the Excel document, which is easy to use. ([email protected])

B.  Making the Business Case for a PFAC

Research highlights a number of examples of where PFACs have had a financial impact on hospitals for those of you who need to build a business case for your CEO.

Vanderbilt University Medical Center

Mary Ann Peugeot, former chair of the PFAC, describes a great example that saved Vanderbilt over a half million dollars. “Vanderbilt was going to replace the recliners in the patient rooms and waiting rooms as a mass purchase. Several different ones were brought in for staff and leadership to sit in and evaluate. The PFAC was also invited to be a part of the exercise and we provided our input. The ‘favorite chair’ was rated well by staff and by all but two of the Council members. Those two were queried by our staff liaison, who was surprised that they said that chair was ‘definitely out.’ The reason: they were both diabetic and knew from experience that this recliner hit their legs in the wrong position and would not be good for anyone with that condition. Because of this one discovery, Vanderbilt abandoned that chair mass purchase and saved the medical center around $540,000.  Other chairs have been replaced over the years as needed, but the input of two Council members tipped the scales in the thinking process.” (October 2014)

Longmont United Hospital

Michelle Bowman, RN at Longmont United Hospital in Colorado, a designated Planetree hospital describes a suggestion from their Community Wisdom Council (CWC).  “Two of our CWC members are part of our Care Partners program, volunteers who meet a frequently admitted patient while in the hospital. They do one follow-up home visit and numerous follow-up phone calls to assist in helping the patient stay out of the hospital. Our Care Partners work in tandem with a Master Coach RN and have weekly debriefing sessions at the hospital and training to deal with challenging issues. We have dropped our readmission rate from 15 percent to 8 percent, in part, by using Care Partners which saves $30,000-$90,000 in readmission costs. (We don’t get paid by Medicare or Medicaid if a readmission occurs within 30 days of discharge if the patient returns with the same diagnosis.) In the three years we have been doing this program, we know our volunteers have prevented at least six readmissions per year. That is a big savings for our 200-bed hospital.” (October 2014)

GR Health

At GRHealth, PFAC members suggested revisions in the explanations of medications for patients in neuroscience units. As a result, medication errors dropped by 62 percent, according to Peter Buckley, MD, Interim CEO and Dean of the Medical School. GRHealth’s first PFAC launched in 1994. Today there are over 200 patients and family members who are referred to as “family faculty,” teachers who advise and participate in many aspects of the hospital’s services. (November 2014)

Dana-Farber Cancer Institute

At Dana-Farber Cancer Institute in Boston, the PFAC suggested that afternoon food carts wasted a lot of food and suggested options that decreased the amount of waste. “PFACs have had enormous impact,” stated Pat Stahl, PFAC staff liaison and manager of volunteer programs and services at Dana-Farber, which, in 1998, was one of the first hospitals to start a PFAC. (November 2014)

WellSpan York Hospital

Perhaps the idea with one of the best returns on investment was at WellSpan’s York Hospital in Pennsylvania where patients were frustrated over recurring problems with billing practices. The patient advisory group suggested two letters to better explain the fees and the discount for prompt payment, (patient involvement could not be confirmed). Prompt payments increased by six fold, boosting the net present value of the collections and decreasing collection costs. (2014)

Stanford Hospitals and Clinics

At Stanford Hospital and Clinics, the Cystic Fibrosis PFAC worked on reducing the number of missed appointments, which wastes resources and costs the hospital money. The council found that the biggest problem was the patient’s inability to get to the hospital. They put together a package with local transportation options, which is given to each patient. The results are fewer missed appointments, saving the hospital money. (September 2014)

Here is a link to a storyboard displayed at the 2014 IHI Forum on PFACs saving their hospitals money:

http://joansfamilybillofrights.com/wp-content/uploads/2015/01/IHI-Storyboard.pdf

Children’s Hospital of the King’s Daughters

Marnie Dyer, Parent Support Coordinator at Children’s Hospital of the King’s Daughters, pointed out another advantage of PFACs – donated services and products. “Through the resources of our advisors, we are generally able to complete projects significantly under what the cost would have been. For example, we have a “NICU Wall of Fame” and through our advisors, we were able to secure a professional photographer who donated his services. Another advisor used her connections at a local high school to have a class construct the frames and donate the materials. One advisor is a creative director, and she designs many projects and gets reduced printing.” (May 2014)

Other activities include fundraising and applying for grants.

C.  Forgetting to Ask the PFAC

Riley Hospital

In an example where the decision not to consult with patients and family members cost a hospital money, Darla Cohen, Coordinator of Patient- and Family-Centered Care at Riley Hospital, described an incident. “The Customer Experience Department designed, developed and implemented a Welcome Packet for all patients that did not take into account comments and suggestions made by the Family Advisory Council for our children’s hospital. As a result, thousands of dollars were wasted because no one will use the packets in their current form. Input from Family Advisory Councils will inform subsequent versions.” (April 2014)

Here’s another example that Ms. Cohen described where family input was not sought in advance, resulting in an unnecessary expense. “We built a new 10-story inpatient tower and had been moving patient units in stages into the new building. Based on feedback from our advisory council and family focus groups, the surgery waiting space was located fairly close to the surgery suite area. However, it was a long, narrow room with no windows and outfitted with four televisions. When our Family Advisory Council members saw it they were appalled. The Coordinator of Patient Experience for Design and Construction happened to attend a council meeting for some other reason and was really surprised (shocked) at the extent and fervor of the negative reaction from parents. As a result, the entire space was redesigned, at great expense, to include almost all of the recommendations of the council. Reactions from families now using the space are extremely positive.” (April 2014)

D.  Identifying Barriers

A survey distributed at the end of 2014 revealed the major barriers to starting a PFAC. Respondents indicated time limitations and staff as the most prevalent reasons followed by competing initiatives and no priority for why they don’t have a PFAC.

AHRQ document, Working with Patients and Families as Advisors, identifies several challenges for hospitals including resources, administrative barriers that view the cost only and not the benefit, clinician and patients views that might doubt the value.

http://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/howtogetstarted/index.html

 E.  Finding a Champion

Critical to the success of a PFAC is finding a champion, preferably in the C-suite (CEO, COO, COA, etc.). You can look for people who, in the past, exhibited:

• Support of patients, as well as employees and co-workers
• Good listening skills
•  High emotional intelligence – people who are empathetic to others in their language and actions

You don’t want a champion who is arrogant and likes to hear themselves talk. If you can’t find a champion in the C-suite, you’ll probably have a more difficult time facilitating a successful PFAC.

F.  Identifying the Staff Liaison

 Once the champion is identified, the next step is to find a staff liaison, who will perform the tasks to get a PFAC up and running. This person should have the following characteristics:

• Passionate about patients and families
•  Good listener
• Well respected within all levels of the organization
• Attention to detail with the ability to juggle a number of projects
• High emotional intelligence

G.  Developing the Budget

In examining how PFACs have saved hospitals money, it’s also necessary to take a look at what PFACs cost a hospital. In the second survey in November 2014, nearly 50 PFAC of respondents have no budget. Slightly over 35 percent do have a budget. Nearly 30 percent indicated one to two full-time employees work with the PFAC, nearly 25 percent said less than one full-time employee and nearly 15 percent said that the PFAC is staffed by volunteers. Another 15 percent indicated that more than two full-time employees staff the PFAC work. Most PFACs operate on a shoestring budget with the only cost of food and drinks for the meetings.  

Stanford Hospital and Clinics has found PFACs so beneficial that the hospital hired a program manager. Most of the council meetings are held at night and many of the staff members are exempt employees, so little overtime is necessary. When an advisory council is started, Ms. Forte Scott guides the group for six to eight months after which a patient or family member chair is elected and, along with a staff advisor, begins managing the meetings. All the PFACs are linked through the Patient and Family Partner Program Advisory Board which Ms. Forte Scott chairs. “Patients and families are our partners in all we do,” she says. (September 2014)

H.  Compensating the Members

Opinions are split on whether PFAC members should be paid. Some people believe that paying PFAC members changes the dynamic and they should not be paid. On the other hand, others advocate covering members’ travel costs, paying for babysitters and even paying an honorarium.

I.  Creating the Timeline

Creating a PFAC can take anywhere from three months to one year. One of the first tasks is to create the action items required and the timeline.

	Success Steps	Comments
1	Conduct feasibility assessment – In your opinion…	Depending on score – identify barriers, proceed to the next step, etc.
2	Formally solicit support from leadership	Email proposal with authority to proceed
3	Identify a high level champion	C-suite or direct report
4	Identify PFAC area – e.g. general, pediatric, etc.	E.g. Could be an area where HCAHPS scores are low
5	Develop a budget	May not be necessary (drinks, snacks, parking, gas, etc.)
6	Establish a time-line	Set goals
7	Decide on the PFAC size	5 to 15 is optimal (according to most PFACs)
8	Analyze the hospital’s demographics	Age, gender, ethnicity, sexual orientation, location, condition (chronic), etc.
9	Identify the ideal candidate qualities
10	Create plan to identify candidates	Survey comments, patient complaints/compliments, MD/RN recommendations, newsletter, website, etc.
11	Create the application process	Invitation to apply, application, background check interview, etc.
12	Develop the application
13	Identify potential candidates to mirror demographics
14	Invite candidates to apply	Send letter to candidates asking if they would like to apply
15	Request applications from candidates
16	Interview the candidates	Look for candidates who have constructive criticism
17	Select the candidates to attend the first meeting
18	Identify staff liaison	Staff person may need to be involved on proposed projects
19	Conduct the first meeting	View candidate interactions and group dynamics
20	Train the candidates in PFAC dynamics	Meeting participation, types of projects, metrics, expectations, research techniques, etc.
21	Invite applicants to become members	After first meeting assessment, invite appropriate candidates as members
22	Provide hospital training	HIPPA, etc. — could be on-line
23	Provide medical tests	TB test, HepC, etc.
24	Hold the second meeting
25	Create the Vision, Mission and Norms
26	Select the Chair or Co-Chairs
27	Identify projects	Solicit from PFAC members as well as hospital staff challenges
28	Establish metrics	Decide how project success will be measured
29	Institutionalize projects	Incorporate projects within the hospital processes
30	Monitor success	Benchmark projects prior to changes and measure after implementation
31	Report results	Track all projects with before measurements and after implementation results for an annual report
32	Solicit involvement from hospital staff	Highlight PFAC projects and solicit staff challenges for patient input
33	Publicize results	Distribute PFAC results to leadership and hospital staff to encourage involvement
34	Bring  members onto all hospital committees	Safety, quality, website, etc.
35	Allow PFAC to run on its own	Many PFACs conduct their own meetings without staff present

III.    Council Members

Once the support of leadership is attained, the next step in the process is to find the council members.

A.  Deciding on the Size

In the Beryl Institute survey conducted in the spring of 2014. Here are the results on the size of PFACs that responded to the survey:

• 30 percent of PFACs have 11 to 15 members on the Council
• 23 percent have 5 to 10 members
• 22 percent have 15 to 20 members

The complete survey results report, PFACs: Where’s the Money? can be found at:

https://joansfamilybillofrights.com/wp-content/uploads/2014/10/TBI_-_PFAC_BarbaraLewis.pdf

B.  Analyzing the Demographics

People should reflect the demographics of the hospital population. Too often council members are retired, white and, oftentimes, women. The hospital should have data on the patients’ demographics, which will help to identify the representative members of the council.

Demographics could include qualities such as:

• Ethnicity
•  Age
•  Location
• Disability/Disease
• Religion (Current/Childhood)
•  Education
• Economic Class
• Work
• Income/Economic Status
• Sex
• Gender

Certain children’s hospitals have councils with children as members.

C.  Identifying the Ideal Candidate Qualities

One of the goals of identifying council candidates is to reflect the demographics of the community, which the hospital serves. Qualities and skills of patient and family advisors, as identified by the Institute for Patient- and Family-Centered Care, include individuals and families who are able to:

• Share insights and information about their experiences in ways that others can learn from them.
• See beyond their own personal experiences.
• Show concern for more than one issue or agenda.
• Listen well.
• Respect the perspectives of others.
• Speak comfortably in a group with candor.
• Interact well with many different kinds of people.
• Work in partnership with others.
• Have a teachable spirit.

D.  Deciding on Parameters

Term Limits

Many PFACs have one or two year term limits. The constant turnover means the council will have new perspectives. However, other PFACs have natural turnover as people leave the council over one or two years and have opted not to have term limits.

Time Commitment

Many PFACs meet once a month for 12 or 10 months of the year, perhaps taking off the summer months. Meetings are usually between one to two hours.

E.  Finding Candidates

Ways to find council members include:

• Written comments in survey
• Patients and family members who have complimented and complained to the hospital and staff
• Recommendations from staff, ombudsmen, etc.
• Newsletter articles requesting volunteers
• Website page that invites visitors to apply
• Pamphlets in waiting area
• Posters in the cafeteria
• Messages in pharmacy bags
• Local TV Public Service Announcement (PSA) – PSAs have worked well with several hospitals
• Community groups
• Church groups 

GRHealth reaches out to LGBTQA groups in the community, asks interpreters to suggest candidates and reviews patient satisfaction surveys to identify people who fill out the survey in a foreign language. Other hospitals send champions to organizations with members they would like to have on their PFAC.

In the second PFAC survey in 2014, respondents indicated that they had difficulty finding a diverse representation of patients. Several others mentioned that patients and family members can’t commit the time for PFACs that meet during business hours. A few others cited the lack of patient and family member understanding about the PFAC’s role.

F.  Using an Application Process

PFAC applicants should fill out a comprehensive application to ensure that candidates are well-suited for the role. In addition to name, address and contact information, applications should contain work and volunteer history. Questions could include:

• Why do you want to serve on the PFAC?
• In what areas can you potentially contribute to a PFAC?
• What are your areas of interest?
• What are your expectations of the PFAC? 

In an effort to reflect the demographics of the hospital, questions could also include the following: age, gender, ethnicity, languages spoken, sexual orientation, etc. (Check with your legal department to make sure these questions are appropriate.) Another question should ask about the candidate’s experience in the hospital such as hospitalization, emergency room, intensive care unit, etc. 

Track the source of applicants to determine which are successful by asking, how did you hear about us?

AHRQ has an example of an application on their website as Word and PDF documents:

http://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/strategy1/index.html

G.  Interviewing the Candidates

PFAC candidates should be interviewed individually. Questions can include the same questions in the questionnaire, as well as others such as:

• During a recent visit to the hospital, please discuss what impressed you and what disappointed you.
• How would you convert the disappointments into strengths?

H.  Interviewing Departing Members

For candidates who leave on their own, PFACs are interviewing people about the reasons for their departure to understand if there are opportunities for improvement.

IV.    The First Meeting

The first meeting is important in that it sets the stage for the successful launch of the PFAC. The meeting room should be comfortable with non-alcoholic drinks and snacks served for a relaxing social atmosphere. Chairs should be arranged so that everyone can see each other. Meetings should always begin and end on time, and should include an agenda that, for subsequent meetings, should be distributed prior to the meeting.

The PFAC hospital liaison should lead off the meeting with welcoming the attendees, introducing themself and describing the purpose of the PFAC. AHRQ has an example of a 31 slide introduction PPT on their website, plus a handout, “Am I Ready to Become an Advisor?” and an orientation manual.

http://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/strategy1/index.html

Next, the chair should ask everyone to introduce themselves, including their professional and personal background and the reason why he/she is interested in joining the PFAC. The chair’s role is to assess the individuals’ interactions with each other, looking for the qualities identified for ideal candidates.

Next, the chair can distribute the PFAC member job description and ask for a discussion about the qualities.  

Finally, the chair should close the meeting, mentioning that formal invitations will be sent out within the week. The debrief after the meeting should include a discussion about each person’s interaction, contribution, and perspective as a council member who will offer constructive suggestions, as opposed to having an axe to grind.

GRHealth defines a patient and family advisor: “Any role that enables patients and families to have direct input and influence on the policies, programs and practices that affect the care and services individuals and their families receive.”

Rather than taking time to sign non-disclosure/confidentiality documents at the meeting, send the documents by email and ask for electronic signature or fax or snail mail.  See the AHRQ for a confidentiality form:

http://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/strategy1/index.html

A.  Training the Candidates

 Most hospitals require HIPAA and confidentiality training for volunteers; however, very little education is offered for PFAC members embarking on their important role. Advisors need to research projects, measure results and publicize the impact. Advisor training should include the following:

• Research methods on the internet
• Interview techniques for interviewing potential PFAC members. (Some PFACs ask members to interview employees.)
• Metrics to gauge before and after results
• Persuasive report writing

B.  Creating the Charter

The following is a sample Charter that includes the mission, the vision, the rules that govern the PFAC and the norms, which expected patterns of behavior that every PFAC should develop to guide their meetings.

• Mission
• Vision
• Responsibilities and Duties:
• Meetings
• Membership
• Membership Diversity
• Membership Terms
• Quorum
• Confidentiality
• Annual Priorities and Goals
• Asking People to Leave

Norms — Sample norms include:

• Start and end the meetings on time.
• Direct, honest and respectful communication.
• Listen and try to understand different point of view; value these differences.
• Confine the discussion to the topic at hand.
• One person speaks at a time.
• Cell phones and/or pagers on vibrate or turned off.
• Notify meeting facilitator if unable to attend the regular monthly meetings.

C. Asking Council Members to Leave:

Occasionally, if a council member is too disruptive or not working out, the person may be asked to leave. AHRQ has an excellent example of language asking an advisor to step down:  

http://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/strategy1/index.html

Here is a link to the charter used by Healthcare and Patient Partnership Institute:

H2pi.org > Tools > Free Templates, Click Folder (at bottom of page) > H2Pi Templates > Read Me Files > H2Pi Charter

D.  Selecting the Chair or Co-Chairs

Most PFACs have a chair or co-chairs that are elected or solicited. One chair may be from the hospital and the other from the council. The meetings may be conducted by the hospital chair or the council chair. In some hospitals, such as Stanford, PFACs are guided by hospital staff for the first six months and then they fly on their own. 

V.      Projects

A.  Establishing Metrics

Despite the unanimous agreement among many individuals that PFACs are important and that they provide valuable contributions, it was difficult in the initial research to find statistics regarding the money a hospital has saved from a PFAC suggestion. In fact, there were a number of people who believe that PFAC ideas should not have a financial component, some suggesting that if hospitals need a business case before involving patients and family members, that a PFAC would not be successful.

Rather, interviewees pointed to industries where consumer research, using surveys, focus groups and other feedback methods, contribute invaluable ideas to companies, who for decades have relied on consumers – both big and small. Disney is legendary for its children’s panels, where children play with toys and games, and watch TV shows and movies. Many companies will only release products and services if they’ve been vetted by the consumer. Yet, hospitals seem to be reluctant to ask their “consumers” questions or obtain feedback.

1. Survey Results

In the Beryl Institute survey conducted in 2014, very few PFACs could point to concrete statistics about the impact, financial or other, that projects have on hospitals.  https://joansfamilybillofrights.com/wp-content/uploads/2014/10/TBI_-_PFAC_BarbaraLewis.pdf

• Sixty percent of respondents indicated that their PFACs benchmark projects some of the time, in contrast with nearly 20 percent that never do. Only eight percent always measure the status before the project starts.

•  Asked if they used surveys to benchmark before PFAC projects are implemented, half of the respondents have never used surveys to benchmark projects before they are implemented, compared to nearly 40 percent that have.

• Only five percent of PFAC projects always incorporate metrics to gauge success; however, over 50 percent of respondents say that metrics are sometimes implemented. One quarter of PFACs execute projects that never utilize metrics.

• Nearly half of PFACs sometimes measure the success of each project at some time after the project has been implemented; 13 percent always evaluate the progress of PFAC projects. However, nearly 25 percent never measure the success of projects.

• When asked if there is a process or a procedure for implementing a PFAC project, 50 percent of respondents indicated that sometimes there is a process, 20 percent of PFACS always follow a process or procedure for execution. Unfortunately, 15 percent never use a process or procedure for project implementation.

Based on the survey responses, thriving PFACs are an integral part of hospital efforts, specifically when projects are benchmarked. This includes implementing specific and measurable processes or procedures that can be tracked and followed to determine outcomes and ultimately gauge the level of impact and success. The survey results revealed that having a structure in place for project implementation was a key to success in effective PFAC impact, which can serve as a guiding process for many organizations struggling to establish or accelerate traction with existing efforts.

In the second PFAC survey, participants were asked if they track the return on investment for the PFAC projects. Less than 10 percent of respondents track the ROI. When asked about the amount only two respondents mentioned an amount – 7 percent and 18 percent.

2. Sample Metrics

The famous adage, “You can’t manage what you don’t measure,” sums up the value of metrics. Every project should be measured before and after implementation to consistently prove the impact. Metrics can include the following:

Time

One type of measurement is the amount of time a task takes. For example, one hospital engaged a Spanish translator every time a foreign speaking patient needed to fill out a form. The PFAC suggested translating the instructions into Spanish and putting them on the backside of the form. The need for form translators has been eliminated which equates to a specific amount of money saved.

Money

One of the most common forms of measurement is money – the amount spent before and the amount saved after the project implementation.

Amount

Another measurement form is the amount. For example, one PFAC helped solve the hospital’s problem of low test participation by suggesting the percentage of participation be listed as a large thermometer on a sign. Testing participation soared.

B.  Identifying Projects

Usually, there is no lack of projects that the PFAC can undertake. One way to begin the process is by conducting a brainstorming session, sometimes known as an affinity exercise, where everyone suggests ideas with no discussion about the feasibility until members have exhausted their suggestions. Another way is to write the potential project ideas on post-it notes and place them on a wall. When all notes are up, discussion begins about the feasibility of each suggestion.

Parameters to examine the suggestions include:

• Level of impact
• Amount of time to completion
• Cost
• Degree of difficulty
• Capability of PFAC to undertake the project
• Amount of effort required by others
• Alignment with PFAC and hospital goals

In the Beryl Institute survey conducted in 2014, respondents indicated the areas where PFACs undertook projects. (Please see the Appendix for a complete list.)

• Communication — 93%
• Quality — 83%
• Signage – 77%
• Safety – 76%
• Clinical areas – 74%
• Orientation – 57%

C.  Operationalizing Projects

One of the challenges that a mature PFAC may face is that projects that have been successfully implemented may not have continued. That’s why it’s important to ensure that all projects are operationalized.  

By operationalizing projects, PFACs ensure that their valuable suggestions continue in future years. Operationalization includes writing projects into job descriptions and adding projects to procedure and policy manuals.

For example, one PFAC created sheets with crossword and Sudoku puzzles, available for both adults and children in the waiting areas. After monitoring the amount of sheets taken, the PFAC found that the puzzles were very popular. However, a year later the sheets were no longer displayed in any waiting areas.

The problem was that no one was responsible for replenishing the sheets when they were gone. The solution was to operationalize the task by including the assignment in the daily duties of one of the staff.

D.  Monitoring Success

Every implemented recommendation should be monitored by the PFAC – immediately after the implementation, quarterly during the first year and then periodically. Some recommendations may be instantly incorporated into the hospital operations or procedures and others may need to be put into a practice where it becomes a consistent process. 

E.   Reporting Results

Critical to the success of the PFAC, as well as future budget increases and the number of personnel, who work on the PFAC recommendations, is informing senior management about the projects and the results. In Massachusetts, where PFACs are mandated by the legislature, the councils posted their annual report about their projects on their website. Health Care for All has collected many of the reports and posted them on their website until recently. Currently, the Betsy Lehman Center houses the reports. https://betsylehmancenterma.gov/initiatives/pfac-resources/pfac-annual-reports

Reports should include the following:

• Problem that the PFAC identified
• Research conducted on both the problem and the possible solutions
• Measurement of the problem (time, amount, money, etc.)
• Description of benefits (time, amount, money, etc.)
• Measurement after implementation

VI.    Mature PFACs

When PFACs have been working for a few years and when they are known and have wide support within the hospital, they can, oftentimes, move to a new relationship with the hospital. Rather than working only on project-based ideas emanating from the council, the PFAC association with the hospital becomes more consultative.

In this arrangement, departments within the hospital seek the PFAC’s advice, feedback and input on their initiatives. Departments fill out an application form to appear at a PFAC meeting. Form dimensions may include the following:

• What is the purpose of your visit to the PFAC?
• What do hope to gain from the PFAC interaction?
• How will you use the information you obtain?

The meeting usually begins with a department overview and then the reason for the PFAC’s input. To close the loop, departments return to update the PFAC on the impact of their feedback.

VII.  Institution Support

A.  Publicizing Results

Publicizing the results of the PFAC projects serves two purposes: first, the publicity informs management about their success and second, it lets departments know that a valuable tool for consumer research resides within their hospitals.

Writing an annual report, as is required in Massachusetts where PFACs are mandated, is one way to publicize the results. Presenting the report at board meetings or management meetings further spreads the word about the PFAC impact.

Some PFACs create their own newsletter and distribute it to employees, including senior leaders, former patients, community leaders, volunteers, nearby physicians’ offices, etc. The newsletter might include the PFACs initiatives, the mission statement and a story from a PFAC member, success stories, etc.

B.  Asking Patients to Join Committees

In addition to joining PFACs, patients and families can participate in hospital committees as well. At many hospitals members participate in a wide array of committees such as quality improvement, bioethics, inpatient service, diversity, patient care evaluation, website, healthcare reform, etc.

In the second PFAC survey, respondents indicated that patients and family members participate on the following committees.

	Patient/Family Involvement	%
1	Patient Care or Patient Experience	57%
2	Quality	49%
3	Safety	38%
4	Facilities	24%
5	Board of Directors/Trustees or Board Committees	23%
6	Bio-ethics	19%
7	Strategic Planning	16%
8	Marketing / Communications / Public Relations	14%
9	Diversity	11%

Other involvement included operations, palliative care, research (PCORI grants), LEAN rapid improvement events, patient education and grievances.

Amy Jones, Administrator in the Office of Patient and Family Experience, described the involvement at Vidant Health where patients and family members serve on numerous decision-making and performance improvement committees.  “Patient-family advisors are so deeply embedded into our system’s performance improvement work and in decision-making at all levels that we view our outcomes as being achieved in partnership with patient and family advisors. We have realized significant reductions in serious safety events and hospital acquired infections. These results would not have occurred without patient and family advisors working in partnership with us.” (May 2014)

VIII. Black Belt in PFACs

Do you have a black belt in PFACs?                                      

• White Belt – PFAC exists
• Yellow Belt – leadership support
• Green Belt – members reflect the hospitals demographics
• Blue Belt – members have been trained in council participation
• Red Belt –  metrics with measurement before and after project implementation
• Black Belt – report to leadership, as well as other hospital staff about the success of the PFAC

Based on the research and interviews, here are 10 recommendations for starting and sustaining a successful PFAC.

1. Use metrics before and after implementing a project. Without metrics the project success will be difficult to measure.
2.  Track all projects and their results. The success of a council is based on monitoring every project and the outcomes.
3. Report on results and distribute to leadership. In Massachusetts, where PFACs are mandated, annual reports are required. Although yearly reporting is a good idea, more regular communication with leadership is recommended, so they are consistently reminded about the impact that PFACs have.
4. Implement all projects with a specific and proven process. Too often projects are implemented in an ad hoc method. Every PFAC suggestion should incorporate a methodology for adoption. For example, if through a PFAC suggestion, brochures are now displayed in the waiting room, the action of printing and placing the brochures in their display cases should be included in someone’s job responsibilities.
5. Recharge if the PFAC is struggling by using a guide or consultant. According to the survey, certain respondents didn’t perceive that they had a strong voice or were thinking of quitting the PFAC. Plenty of resources are available to ensure that PFACs are strong.
6. Train PFAC members on committee participation, so they are valuable contributors. Not everyone knows how to participate with impact in meetings. Short education sessions for current and/or prospective members should go a long way to developing valuable participation.
7. Involve patients and family members on all hospital committees. Hospitals with successful PFACs don’t stop with patients and family members on councils. They include patients and family members on all hospital committees.
8. Survey leadership about the PFACs’ impact. One of the ways to remind leadership about the existence of PFACs and gauge their opinions about PFACs is to periodically survey leaders about their impression of the council(s).
9. Spread the word about the availability of the PFAC for research and feedback for hospital projects. As departments become more aware of the PFAC success, they will tap the members to obtain feedback on projects or to co-design projects.
10. Treat PFACs as valuable consumer research tools that can have enormous impact on a hospital’s operation, safety and patient experience. Similar to other industries, healthcare should embrace PFACs as important consumer research techniques that are necessary to ensure that the patient and family members’ expectations are met and even exceeded.

IX.    Resources

The internet provides a plethora of resources for anyone interested in starting or sustaining a PFAC. Some of these resources include the following:

• Healthcare Communities – www.healthcarecommunities.org
• Institute for Patient- and Family- Centered Care – https://www.ipfcc.org/bestpractices/patient-and-family-advisory-programs/pfa-resources-and-tools.html
• Patient Family Centered Care Partners – www.pfccpartners.com
• Healthcare and Patient Partnership Institute – www.h2pi.org
  • Tools to start a Patient and Family Partnership Council for Quality and Safety (PFPCQS)

Planetree International – https://planetree.org

Below is a list of documents and tools for PFACs.

X.      Appendix

A.  Beryl Institute Survey Results

The Beryl Institute supported this survey, which was conducted in May 2014 to evaluate the effectiveness of Patient Family Advisory Councils. The survey received responses from a total of 60 people. You can access the full report at:

https://joansfamilybillofrights.com/wp-content/uploads/2014/10/TBI_-_PFAC_BarbaraLewis.pdf

1. Are you affiliated with a PFAC?

98% of respondents are affiliated with a PFAC.

• How many?

55% of respondents are affiliated with only one PFAC, with an additional 25% affiliated with 2-4 PFACs.

• How would you describe yourself?

“Other” includes:

• PFA
•  Staff Co-Facilitator
• Hospital that is seeking to start a PFAC
• A PFA in one org, and a professional who works w/ PFACS in another
• Hospital rep on FAC
• Hospital staff member/patient and family also
• Family Member that works in hospital and is liaison to CHFAC and NICU FAC
• NM who participates with a PFAC
• Patient Advisory Coordinator

Most respondents (41%) would identify themselves as belonging to a hospital that sponsors PFAC. An additional 33% are patients or family members. 

• In which state are you located?

All respondents were from one of the following states:

Arkansas, British Columbia, California (5), Connecticut (2), Delaware, Florida (3), Georgia (2), Idaho, Illinois (5), Indiana, Iowa, Kentucky (2), Maine, Maryland (2), Massachusetts (5), Michigan (3), Missouri (2),  New Jersey, New Mexico, New York (2), North Carolina, Ohio (2), Ontario, Pennsylvania (3), South Carolina, Vermont, Virginia, Washington (3) and Wisconsin (2).

• Does your state mandate that hospitals have PFAC?

The majority of states (62%) do not mandate that hospitals have PFAC.

• Should states mandate that hospitals have PFACs?

55% of respondents believe that states should mandate that hospitals have PFACs.

• How long has your PFAC been in existence? (If you’re affiliated with more than 1 PFAC, please average the amount of years)

38% of PFACs have been in existence for 3 years or less. ¼ of PFACs, however have been operating for 4 to 7 years, with an additional 28% having been established for at least 8 years or more. 

• If you are a patient or family member on a PFAC, how would you describe the PFAC voice?

For those who are patients or family members on a PFAC, 22% believe that the PFAC voice is oftentimes heard, with PFAC suggestions adopted. 18% believe the PFAC to be an integral part of the hospital and zero respondents thought that the PFAC voice was “rarely heard and PFAC suggestions almost never adopted.”

• How many PFAC members are on the Council? (If you are affiliated with more than 1 PFAC, then please average the number.)

Most PFACs (30%) have 11 to 15 members on the Council, with an additional 23% having 5 to 10 and 22% with 15 to 20 PFAC members on Council. 

1. How satisfied are you with the PFAC with which you are involved?

The majority of respondents (58%) are extremely satisfied with the PFAC with which they are involved, with 32% being somewhat satisfied and only 2 people claiming to be rarely satisfied.

1. In what areas does the PFAC contribute? (Please check all that apply.)

“Other” includes:

• NICU programs, events, groups, ongoing nurse education
• Any issue, concern, proposed change can be brought to the PFAC or raised by the PFAC
• These are all areas we would like our PFAC to provide feedback on
•  The PFAC I volunteer for includes opps in staff education
• Just about everything
• Quiet hospital, environment of care, etc.
• Strategic initiatives
• Policy development
• Bedside shift report training, Educational materials and Family Presence
• We are new, beginning to work on issues families, many identified above, still in info gathering
• Hardly anything
• New construction, training
• Patient education and staff education
• Various initiatives, members of committees and workgroups, executive leadership
• Spiritual care
• Review policies, patient handbook, vision/mission, etc.
• Facility planning; education
• Strategic directions of the organization
• Construction and design
• Resident training, process improvement, service line strategy for service devel
• Virtually everything except the Board
• Portal, infection control, patient education

There is overwhelming agreement (93%) that the PFAC contributes to the area of communication. Other important areas identified by respondents to be affected by PFACs are quality (83%), signage (77%), safety (76%), clinical areas (74%) and orientation (57%). 

1. Do you benchmark each PFAC project (measure where you are before the project starts)?

Most PFACs (60%) benchmark some of the time, in contrast with 18% that never do and only 8% that always measure the status before the project starts. 

1. Have you used surveys to benchmark before PFAC projects are implemented?

50% of respondents are involved in PFACs that have never used surveys to benchmark projects before they are implemented, compared to the 37% that have. 

1. Do PFAC projects have metrics to gauge success?

Only 5% of PFAC projects always incorporate metrics to gauge success but 55% of respondents say that metrics are sometimes implemented. ¼ of PFACs execute projects that never utilize metrics.

1. Do you measure the success of each PFAC project at some time after the project has been implemented?

48% of PFACs sometimes measure the success of each project at some time after the project has been implemented, in addition to the 13% that always evaluate the progress of PFAC projects. However, 23% never follow up on projects to determine whether or not they were successful.

1. Are you aware of any PFAC projects that have saved money for hospitals?

The majority of respondents (79%) are unaware of any PFAC projects that have saved money for hospitals. On the other hand, 19% were knowledgeable of financially beneficial PFAC projects. 

1. Is there a process or procedure for PFAC project implementation?

For 50% of respondents, there is sometimes a process for PFAC project implementation, with an additional 20% of PFACS always following a procedure for execution. 

B.  Partners for Patients Survey Results

After nearly a year of research to build the business case for hospitals to implement a Patient and Family Advisory Council (PFAC), I launched the second national survey in October 2014. The first survey, generously supported by the Beryl Institute, revealed some basic data about PFACs. Subsequent research helped create the financial case for hospitals to undertake starting a PFAC. The Partnership for Patients supported the second survey, which delved into more advanced topics about PFACs. Here are the results of that survey.

Methodology

In October 2014, the survey link was distributed to the Hospital Engagement Networks (HENs) for them to send to their participating hospitals. Unfortunately, less than 30 hospitals participated. In January, the survey was distributed publicly through listservs and to my database. Participation immediately jumped to over 200.  Respondents represented 38 states and the District of Columbia. Ten percent of respondents were from Canada.

Hospital Demographic Results

Nearly 50 percent of the respondents indicated that they belonged to a HEN, although 35 percent said that they didn’t know if their hospital was will a HEN. Over 50 percent of hospitals were urban with most of the others representing rural and suburban hospitals. Nearly 60 percent have 100 to 600 beds. About 50 percent of respondents were middle manager with 10 percent senior managers for the C-suite executives. 

PFAC Data

When asked how they would describe the hospital regarding a PFAC, nearly 70 already have a PFAC and almost 20 percent are in the process of forming a PFAC.  Ten percent have no plans to form a PFAC. Two percent discontinued their PFACs citing inability to find patients to participate, coupled by a change in leadership as the reasons.

Why is there no PFAC?

When asked to select all the reasons why no PFAC exists, respondents indicated time limitations and staff as the most prevalent reasons followed by competing initiatives and no priority.

Is there a budget?

Nearly 50 PFAC of respondents have no budget. Slightly over 35 percent do have a budget.

How many full-time employees?

Nearly 30 percent indicated one to two full-time employee, nearly 25 percent said less that one full-time employee and nearly 15 percent said that the PFAC is staffed by volunteers. Another 15 percent indicated that more than two full-time employees staff the PFAC work.

Do you track the return on investment (ROI) for the PFAC?

Less than 10 percent of respondents track the ROI. When asked about the amount only two respondents mentioned an amount – 7 percent and 18 percent.

Do patients and family members have governance responsibilities?

An even amount of slightly over 40 percent responded yes and no with the remainder not knowing the answer to the question.

What processes are patients and families involved in?

Nearly 65 percent said that they are involved in patient experience assessments, followed by nearly 50 percent involved in safety work and another 50 percent in process improvement. Less than 20 percent are involved in incident investigations.

On what committees/improvement teams/boards do patients and family members participate in? 

	Patient/Family Involvement	%
1	Patient Care or Patient Experience	57%
2	Quality	49%
3	Safety	38%
4	Facilities	24%
5	Board of Directors/Trustees or Board Committees	23%
6	Bio-ethics	19%
7	Strategic Planning	16%
8	Marketing / Communications / Public Relations	14%
9	Diversity	11%

Other involvement included operations, palliative care, research (PCORI grants), LEAN rapid improvement events, patient education and grievances.

If you cannot find patients, please explain the challenges you believe impact this issue.

Twenty-five of the 204 survey participants cited reasons which included the following.

Five respondents indicated that they had difficulty finding a diverse representation of patients. Several others mentioned that patients and family members can’t commit the time for PFACs that meet during business hours. A few others cited the lack of patient and family member understanding about the PFAC’s role. In 2024, a new report will be released through my PhD dissertation. This report will include the key success factors of PFACS, their measurement, and examples of quality and safety improvement. 

Barbara Lewis, MBA

Founder

Joan’s Family Bill of Rights

[email protected]

www.JoansFamilyBillOfRights.com