PFAC Steering Committee

Meet our Steering Committee! Committee members guide the creation and execution of current IPRO PFAC initiatives.

Deneen Williams is a Patient and Family Advisor because she knows firsthand what it’s like to be a patient needing critical care.

Ten years ago, the dual-entrepreneur had to be re-hospitalized because of a life threatening infection after routine surgery. Three months later, she was able to go home, but the long-term impact of that experience inspired her to give back to the health care community.

Why are you involved as a PFAC member?

I’m a PFAC member because I appreciate the tenants of the PFAC. We support the broader medical community with our ideas and experiences. Then we take that information and share it with our community so we can improve care delivery. We’re partners with the medical community helping them plan for programs that enhance care and services.

Personally, I am a part of it because I was a patient. Over ten years ago, I was diagnosed with necrotizing fasciitis. But I didn’t know that until I was released from the hospital three months after being admitted. I had surgery, came home, was really sick, then readmitted, then I was there for over three months.

It was a natural thing for me to become a member because I have experience with being a very healthy person getting simple surgery, to then having to be readmitted, and almost dying. I was an advocate for myself, but thank God, my mother, sisters, and family were around me to support me.

So, when I was invited to become a member it just made sense for me to want to be a part of the PFAC.

Why does it matter to have patients and families involved in healthcare improvement?

I think it matters because we bring a perspective that a provider would not have without us communicating and contributing.

For us in the PFAC, sharing perspectives, and experiences of our family members receiving care, letting them know how we feel, and how we perceive the care they’re giving, only supports providers in making the patient experience better.

I really deep down within my soul feel like that’s what they want: they want to give the best care.

Why not engage patients that have those experiences and use them to improve? It’s all about quality improvement and quality of care.

Coming together to share information, experiences, and knowledge, while brainstorming and innovating around what works and what doesn’t, helps us get better.

So what would you say to convince someone who was considering joining the PFAC?

I would say the PFAC is a community where our voices can be heard. It’s a place where we can make an impact by communicating our ideas. Ultimately, we want to ensure that quality of care for our families and communities are built in from day one. That’s what I think matters. We have a voice and we get to share it, to share our concerns and our ideas with the community, collectively.

It’s not like a one person one voice, it’s a collective voice.

What’s your favorite thing about working together?

I get to meet new people with fantastic ideas and strengths around the subjects. Personally, I don’t have the same deep knowledge that many of the participants have on certain topics so when they speak I listen.

Recently someone sent out information about COVID-19 and influenza and it was really impactful for me. So, I took it and I sent it to everyone in my company and said: We need to make sure we get our flu shots. Some of the information I share, I share it with my family, the people in my church, my organization—I push it out into the community.

What I love most about working together is that I’m learning. When I learn something it makes an impact on me and then I share it with other people. And I can then make a contribution to my organization and to my community. And I think that’s our purpose.

David Andrews is a retired professor who has been involved in PFAC work for 15 years, working with more than 40 local and national organizations. In his many years doing this work, he’s contributed to everything from waiting room design and initiatives that ease patients transitioning from hospitals to homes.

He was inspired to get involved after experiencing extremely long wait times while receiving care from his local teaching hospital. After commenting on it numerous times, he was surprised to get answers that never took account of the patient view. Andrews wrote an email to the hospital CEO and, although he didn’t expect to hear anything back, he was asked to join their Patient Advisory Council.

Andrews appreciates the structural challenges the health care system faces, but emphasizes that even little changes can make a big difference for patient’s experience getting care.

Why are you involved in this kind of work?

I can be someone who is never really cared very much about personal fame, fortune, or recognition. But I do really care about trying to make whatever I’m involved in better.

As I got involved, I noticed there were things, often little and only modestly consequential things that I was able to influence. I began to learn things about healthcare outside of my own experience. My conclusion, to be undiplomatic? It’s a hot mess and needs a lot of help. But I’m not naïve enough to believe I’m going to magically be the savior of it.

I keep going in the occasional hope, and modest evidence, that things are inching along in some positive directions.

More specifically, the presence of the pandemic creates an environment where people begin to recognize the important changes that have to happen. The easiest example is telehealth, but there are others. It feels like a dynamic time where being involved has the potential to really stretch and move things in some good directions.

Why does it matter to have a PFAC perspective?

Ultimately, healthcare only exists because people need it.

If you talk to doctors and others about the things that bother them, a perennial concern is what used to be referred to “non-compliance.” The patients for some good reasons, and some for bad reasons, don’t do what’s in their best interest.

My view comes from my experience in teaching. In talking to other people who were not happy with their students’ performance, they would say something like: “well I taught it but they didn’t learn it.” Blaming them for not getting it. My response to them is “if they didn’t learn it, you didn’t teach it, you just talked a lot.”

It’s the same thing in healthcare. If patients don’t make changes that are in their best interest, it’s because you didn’t understand them or interact with them in effective ways. And that’s a serious burden to put on a doctor, I understand that.

At the same time—if you don’t create a collaboration between patients and healthcare providers, that’s a real meaningful one, it’s also not going to work. And it goes both ways, patients have to understand the world of the healthcare providers

So what would you say to convince someone who was considering joining the PFAC?

I would ask someone about their healthcare, their experience or a family members experience. What’s been positive and what’s been not so positive? Then talk about the importance of people sharing their experiences and stories. If they share their perspective and experience they can help.

I can talk about me, but lots of other people I’ve known in this work are real examples of that happening.

Are there particular projects you’ve worked on that you’re particularly proud of?

The things that I feel best about are the things where nobody knew that I did it. And as a teacher I always felt that students may never understand what I did for them and I may never know it either. I feel sort of the same about a lot of what I’ve done in health care very often. There are lots of things where my ideas had some influence building design or materials that are given patients.

For me what’s important is the appreciation that changing a big complex system like healthcare is a very slow process. The system has “ultrastability.” You have to take a systemic approach to things. Look around for the balance points, the parts that can shift the dynamic enough, to move towards a bigger change once you’ve made the little bitty change. I like to think what I do is look for balance points to try and create something that shifts things.

It’s important to have patients, who are the ones, after all who are being treated, be part of the discussion in a meaningful way. This will help the whole thing get better, because it needs it.

Dr. Peggy Crawford has a lifetime of experience in the health care field. She trained as a nurse but eventually earned a Ph.D. in psychology to build onto her desire to support patient health and wellness. Dr. Crawford has devoted her career to helping people of all ages and their care partners deal with the impact of living and managing chronic health conditions. However, when her husband, considered one of the pioneers of pediatric psychology, became ill with cancer, she experienced a new view of the healthcare system.

Dr. Crawford contributes her insight into everything from chronic obstructive pulmonary disease (COPD) tools for patients to palliative care workgroups. Her perspective as an expert and patient advocate has been valuable to Healthcentric Advisors and many other organizations over the years. We’re honored to have her as a part of the IPRO QIN-QIO Patient & Family Advisory steering committee.

Why are you involved in this kind of work?

There is such a difference across groups of people and what people feel they can do for themselves. Sometimes we don’t individualize enough, so we make a lot of assumptions, and we take a lot for granted.

I believe in empowerment and giving people the tools they need. However, there are also a whole group of people who need a lot more help. We have to constantly ask: Do they know when to use that tool? What if the tool isn’t working? What if? What if? What if?

There would have been no way my husband, who was incredibly smart, would have prepared for every visit like I prepare for visits. Or would have come back with the amount of information I could collect or conducted the visit as I could. I was like a lioness with a cub; I would stand up for him, I would speak on his behalf–because a lot of the time he just felt off. I wanted to make sure that when we left there, I understood to some extent what actually happened: what was expected of us or what’s the next step?

Why does it matter to have a PFAC perspective?

It’s an essential ingredient—it would be like trying to make a pasta dish without any starch—it’s just not going to work. The experiential piece brings a different perspective.

As a health care professional, it’s valuable to look in on an interaction of someone receiving care and watch health care professionals interact with patients and families. I know I’m not your typical PFAC member because my whole life has been in health care, but my experiences make me a good combination. We’re the link to other families and patients—people should take what we say and consider it credible because we have a foot in both camps—both a provider advocate and care partner.

Having us involved communicates respect for our experiences. It’s important to incorporate how people experience things. Plus, being heard is important—and being a Patient and Family Advisor is an example of “I feel heard.”

So what would you say to convince someone who was considering joining the PFAC?

I think that as I’ve been involved in these projects, it’s very clear that the staff value input from advisors. They validate our experience and truly feel like it can have a positive impact.

I love feeling like you can get your teeth into something, and people will listen to you and take you seriously. And then being able to do presentations with a Healthcentric Advisor team member? I loved that! It was good for me, for her, and the group.

The most rewarding work is feeling like I was a part of something, feeling valued, and getting to know these people.

Are there particular projects you’ve worked on that you’re particularly proud of?

One was a presentation about how to approach an annual wellness visit—I really love that project. It was a group effort with other PFAC members and Healthcentric Advisors staff. We crafted the presentation together, then went out into the community to deliver the information.

We went into living facilities for older people and did presentations for them—so they would know what the annual wellness visit is, what they should be getting, and what questions they should ask. Then, we would edit the project based on our visits with the groups.

PFAC Steering Committee

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