Steps to Establishing Effective and Long-Lasting Patient Family Advisory Councils

Nancy Michaels, President,

In our value-based system in today\'s healthcare, it\'s more imperative than ever to involve patients and family members in their care. A Patient Family Advisory Council can offer hospitals and healthcare systems just that—additional insights, opinions and help based on their own experience as a patient or a care giver to a patient.


In our value-based system of healthcare, it's more imperative today than ever before to involve patients and family members in their own care. A Patient Family Advisory Council (PFAC) can offer hospitals and healthcare systems just that—additional insights, opinions and help based on an individuals’ experience as a patient, family member or a care giver.

In nearly every industry, tapping into customer opinions is not only desired, but aggressively sought out. You can’t make a phone call these days without being asked by an automated ‘customer service’ representative to stay on the line to complete a survey at the end of the call – after you’ve finally spoken to a person at the other end of the line. This is true among cable companies, financial service firms, tele-communication organisations – the list goes on.

The concept of ‘customer service’ is a relatively new one in medicine. At a recent professional healthcare association meeting a paediatrician took great offence when someone referred to a patient as a consumer. He vehemently disagreed with this concept, however, looking at patients as individuals who have choices, unique needs and wants, who more actively seek out the ‘best’ reviewed practitioners through online reviews or personal referrals, it might be wise to consider patients as both – patients and consumers – who have the power to make choices based on their experience or what they want their experience to be.

Rarely, if ever, has medicine engaged patients or family members in a survey to access the quality of the interaction between medical practitioners (front line personnel to interactions we might have with a doctor or more likely a nurse) and their patients or family members with the exception of a quantitative survey that you receive weeks after being discharged from the hospital – when most of us want to not remember our hospital stay and are grateful to be home. One would think hospitals and healthcare systems might not be interested in hearing constructive feedback until recently with the advent of PFAC’s that are emerging within medicine to actively seek out the opinions of patients and family members on ways to offer constructive conversation on how to improve the patient or family experience within hospitals.

In 1978, Dr. Warner Slack (late) wrote that “the largest and least utilised resource is the patient.” Other innovators who were in support of giving patients a voice in their healthcare includes Dr. Tom Delbanco, who was part of the group that adopted the slogan “Nothing about me without me” and later went on to co-found OurNotes with nurse Jan Walker. OurNotes is an initiative through which patients have access to their doctor's notes taken about them during appointments and can read and respond to them directly with their doctor online.

The Society of Participatory Medicine (SPM) was also recently established by Dr. Danny Sands at Beth Israel Deaconess Medical Center and his patient Dave deBronkart — known as e-Patient Dave. The ‘e’ stands for ‘empowered, engaged, educated, enabled.’ Both Sands and deBronkart had a vision to establish SPM as a non-profit organisation dedicated to participatory medicine — whereby patients become involved and responsible decision makers for their own health and providers encourage and value patients input as true partners.

Today, I’m on three PFAC’s (Beth Israel Deaconess Medical Center’s ICU PFAC, Partnerships for Patients – PFP, through the American Research Institute retained by Medicaid/Medicare, and the Consumer Health Council of Massachusetts Health Quality Partners – CHC MHQP) and each is unique in its approach to solicit the opinions of patients and family members. Clearly, there’s no “right” way to run a PFAC, however, I’ve experience three different models of how it can be done successfully that I’ll share in this article.

I spoke at the Beryl Institute on Patient Experience’s national conference in April this year, when I sat in on a discussion about PFAC best practices. What surprised me, despite that I’m with several PFACs, I came to each in three different ways (application and interview to the hospital ICU PFAC, referral to a virtual PFAC for a research institute then an interview, referral then interview for an organization on health quality PFAC). Clearly there is not one standard of establishing or running an effective PFAC. At Beryl, it was even more obviously that PFAC’s were run in very different ways including how members were chosen to apply, extensive or brief interview processes, ability to meet frequently (monthly), desire for participants to review and make recommendations based only on the agenda of the hospital versus wanting to hear PFAC members out on ways they thought things could improve.

Here’s my perspective given my own participation on several PFACs, as well as what I heard at Beryl and in doing research for this article.

The Case for Establishing a PFAC

The primary reason for a hospital or healthcare system to want to establish a PFAC is to fully engage with individuals who have experience as a patient or family member and who want to make a contribution and improve the overall understanding of our (patient and family members) unique perspective.

Ideally, bringing in a diverse group of people with unique experiences within a healthcare system come together to share insights and work together toward a common goal – to improve the patient experience – great things can happen that really make a difference. There’s overwhelming promise to improve overall patient care as well as to line up with a hospital’s mission, vision and overall goals in improving patient care and communication.

For the investment – which is relatively low – a PFAC can be a huge asset to a hospital or healthcare system.

What Makes a PFAC Effective?

The effectiveness of a PFAC is related to several aspects and pre-planning from the get go. Some considerations include

• Seeking out a group of highly motivated patients, family members and caregivers

• Engaging staff who apply firsthand knowledge in improving the experiences of patients and caregivers

• Choose a diverse group of volunteer patient membership including young and old, people from varied demographic and geographic backgrounds and ethnicities and patients with different types of illness. The caregiver group is similarly diverse with partners, children, and parents volunteering time and energy Ideally, patient advisors come to the council from all points in care — from seeking treatment to surviving a major illness.

What Does It Take to Run a PFAC?

Initially, you need to identify the right PFAC internal team to find hospital staff members who look at patients and families as having fresh perspectives on care based on their own personal experience. You do this in the same way you choose the patients and family members to participate. The internal committee should recognise that patient and family engagement is a quality improvement strategy, and are interested in creating, managing, and leading a PFAC. It’s always wise to engage staff, leadership, and clinicians to participate on a PFAC as well – so that patient and family member’s experiences are known throughout all levels of a division or department.

A committed PFAC leader who will ensure the success of the PFAC and to help manage the work of the PFAC overall. That person serves as the main point of contact for the patient and family advisors, and coordinates the feedback process from the patient and family advisors to the leadership and staff. The leader ensures that the PFAC’s ideas and guidance are thoughtfully implemented, and communicates between meetings with other activities or assistance needed from PFAC members. At my ICU PFAC, our leader hosts a private Facebook group whereby we can read things about other members and comment as well as send our leader articles we’ve written, panels we’ve been on, etc.

Other logistics and minor expenses (relative to the feedback PFACs can offer) include:

• Coordinates meeting dates/times and locations
• Ordering meals
• Parking recommendations and reimbursements
• Meeting materials
• Minutes and other notes taken atPFAC meetings.

Many PFAC meetings are held monthly or quarterly, although we are often asked to participate in project-based subcommittees when we meet more often or can assist virtually by sharing a story, experience or opinion. Creating a structure is helpful to establish patient and family expectations and maintain momentum.

Establishing Benchmarks

Goals have to be established to ensure that a PFAC is making an impact and is worthwhile to patients and family members as well as to the hospital in making small or big changes that will positively affect the patient/family experience. Ideally a mission, vision and goals of the PFAC should be clearly articulated to each member during the on-boarding process and may need to shared throughout the process.

Some items you may want to consider or establish with a PFAC are: What goals would you like to accomplish in three months, six months or a year?

Why is this work important to your hospital or healthcare system?

How will your success be measured? How will you continually foster relationships with patient and family advisors?

Although this doesn’t occur in every PFAC, ultimately patients and family members should play a role in shaping the PFAC’s agendas and topics.

• Determine how many patient and family advisors will participate in the PFAC – usually a minimum of eight to 10 people. Make sure that the advisors are representative of your patient population in terms of age, race, ethnicity, geography, family structure, clinical needs, etc.

• Draft a document that outlines staff and patient and family advisor roles, responsibilities, and expectations. In my experience being on three PFACs for more than three years now, each runs quite differently, I believe the strength of a PFAC is in the leadership as well as in the makeup of the individuals on the PFAC. It’s a unique experience to come together with like-minded people – from diverse backgrounds and situations – and find a way to discuss a common vision on how to improve patient and family experience based on our experience.

It’s not often as patients or family members that we are sought out for our opinions on how things could be designed to be improved upon for our benefit on an ongoing basis. PFACs do just that on a consistent and continued basis. Hospitals that create and utilise PFACs recognise the benefits of bringing in the very people they serve – patients and families – together with the real desire to make improvements for everyone.

It appears that Dr. Slack was on to something 50 years ago when he made the statement that “the largest and least utilised resource is the patient.” It seems other innovators may have helped to convince medical professionals and hospitals to tune into patients and families and be open to their participation in medicine.

--Issue 41--

Author Bio

Nancy Michaels

In 2005, Nancy was the picture of success: a sought-after business speaker, the president of her own company, and a mother of three. Suddenly, Nancy found herself in a health crisis that would twice nearly end her life. Miraculously, her extensive rehab left her with no residuals; but, Nancy's life – and the message she wanted to bring to her audiences – were irrevocably changed. Nancy can be reached at