Patient and Family Advisory Councils
We know that making a decision about a major surgery – or being the loved one of someone who making a decision about a surgery – can be stressful and overwhelming.
It’s important that we are sensitive to your needs and that we understand the patient and family member perspective.
That’s why Patient and Family Advisory Councils have been created at each of our five study sites.
Patients and family members of those who have undergone major surgeries participate in the Advisory Councils and guide us in our research. Currently, 18 patients, 7 family members, and 2 participants who have been both a patient and a family member serve on our Advisory Councils.
The groups will continue to meet throughout the study. They meet three times a year and discuss such issues as:
• Are possible participants approached in a way that puts them at ease?
• Are study documents easy to understand?
Representatives from each of our Advisory Councils, along with study faculty and staff, also come together for an annual stakeholder meeting to discuss and evaluate overall study progress.
Above: Participants from all five sites met at our first annual stakeholder meeting, held October 2016 in Washington, DC.
Advisory Council feedback has already been used to make major decisions about the focus and logistics of this study. For example, patient and family advisors helped design the consent forms and the information sheet used in the study.
You can see the imprint of their thoughtful hard work all over the study!
What Some of Our PFAC Members Have to Say
Madison, Wisconsin (University of Wisconsin)
On reflection, over ten years ago when I learned I would need brain surgery for a removal of a benign tumor, I suspect I was in a joint state of shock/denial/ignorance. The outcome of this surgical procedure was favorable, however the entire experience would have been less traumatic for me and members of my family had we been better prepared for the experience. I likely would have better accepted the lengthy road I travelled. Improving communication and encouraging dialogue that improves the patient/surgeon relationship prompted me to invest the time and effort in this particular PFAC.
At my initial meeting with the surgeon, I was in a very unsettled state of mind. I was hearing words I had never heard before and certainly didn’t understand. I was hearing a procedure described that was at best frightening. I was “shutting down” – unable to hear or absorb all the information being presented. Therein lies the real value of our PFAC. It is a group effort to make the “pre-surgery” process more patient and family friendly. It is an effort to open and strengthen the lines of communication between patient and surgeon so that the patient can both “hear” the words being spoken and is more comfortable asking the questions that will increase their understanding of the surgical procedure they face. We hope our efforts will lower the patient’s level of apprehension and improve and enhance the patient – surgeon relationship. The level of pre-surgery apprehension will never be completely eliminated. But the PFAC effort will at the very least improve the communications between patient and surgeon.
Newark, New Jersey (Rutgers New Jersey Medical School)
After a life altering diagnosis, illness, and multiple surgeries then in the midst of a difficult recovery, my wife gets the news that she has a serious medical condition that needs immediate attention. Wow! How we were not prepared for this. However, through faith, much prayer, a great physician and hospital staff everything turned out fine. But what an emotional burden going into this medical emergency with many questions left unanswered before and after the surgery. Then, we were approached by a staff physician to attend a meeting where as we could share our experiences and possibly help other patients and their families have a positive experience with their upcoming surgical needs. There lies the Rutgers PFAC and Dr. Berlin. Having a background in the medical field before my illness and now serving on the Rutgers PFAC team and having attended the first annual meeting, experiencing the full scope of the study. I have concluded this to be one of the most important studies in improving patient’s experience before, during, and after surgery. I believe without a doubt at the conclusion of this study there will be patients around this country whose surgical experience and their relationship with their surgeon has been greatly improved concluding with a positive perspective and experience regardless of the surgical outcome. I believe this is a study that should continue for many years to come because there are ever evolving fears that need to be eased and addressed by patients who are about to experience a life change experience.
Portland, Oregon (Oregon Health and Sciences University)
My name is Debbie. I have been a patient at OHSU since 1971. I’m just like all of you. Having medical problems since early childhood, I know how important it is to have the best medical help you can get. You need to have a voice in your own care. I know it can be scary. Having your voice heard can make all the difference in how your care will have the right outcome. I’ve worked most of my life, having children and granddaughters. It was important decision making with my doctors, hospital staff, and family that made it all possible. It is so important that you have an honest discussion with all of your health care providers. By joining this research study (PCORI) you ensure your voice will be heard, before a surgery is done. Also, you are paving the way to have your voice count. As a patient for 44 years, from two types of cancer, to end stage renal failure, all of the studies and research groups I have been involve with has meant a longer, fuller, life for myself. Working close with your doctors, helping them help you. It is important for me to share my story, hoping this helps you get the results your needs. You’re not alone. Mostly don’t be afraid to speak out!
San Francisco, California (University of California San Francisco)
Above: Our San Francisco study site’s PFAC members
I am a dual-citizen of both France and the US, and PhD educated. My education and experiences abroad have given me a better perspective on the American healthcare system and a more accurate lens for improvements. I have realized communication and education are two areas needing improvement. I have experienced this while being diagnosed with cancer and undergoing several surgeries here by myself. It was not easy because I was not always clear on why certain options for my treatment were better. Although I favor more the care given by surgeons and nurses here, I would like to point that having lived in France for most of my life, patients have longer stays in clinic to rest and have surgeons/nurses checking-in on the patient’s recovery and well-being. Also, more recommendations should be given after surgery to family members by doctors, perhaps in written form! Being able to provide my opinion on my unique experiences is one reason why I was excited to join this group. I greatly enjoy being a part of the PCORI, Patient and Family Advisory Council, well- coordinated by Luis Vite, Research coordinator & Dr. Jeanette M. Broering, Director of Data Operations. I am sure there will be big improvements made because of this study and I am happy to be a part of it.
I am from Lake Providence, Louisiana. I came alone to California (Bay Area) at the age of 18, and worked in the state of California until I retired 3 years ago. I have volunteer experience in a hospice-related field and with a “mission possible group” where I helped with cross-cultural inclusiveness. Regarding my hospice care involvement, I was there when patients passed and helped support the family after they passed. I was there and helped while they needed me most. When UCSF contacted me, I was inspired to join the PFAC because I had a major surgery and felt I could give valuable information regarding pre-surgery. I believe that having a PFAC for this study is important for several reasons. Among seniors there is a disparity in knowledge due to communication barriers; some are more informed than others. Language can also be a barrier. There may be different interpretations especially for those that speak a second language and are more likely to miss something. Another is helping eliminate fear of surgery through knowledge and questions; surgery can be a scary time. This study is important because it encourages people to ask questions so they feel more relaxed and at ease.
The PFAC is one step in the right direction toward patient advocacy and I think this is huge/very important. Advocacy can ease the mind and help as a support system— help with clarity around what is happening (for patient and family).
I am trained as a classical dancer, pianist, biological scientist and attorney. Presently, I do a lot of community volunteer work, especially trying to help the elderly and the disabled. I was inspired to join the PFAC to try to make the system better. My husband had a high-risk surgery in July 2015. I, myself, was an inpatient following ankle surgery last March. My experience with the physicians, nurses, and technologists was universally outstanding. In my opinion, patient experiences could be vastly improved if there was greater recognition that patients are customers. Satisfying the patient’s needs should be a priority and from my experience this comes from a clinical team who listens and communicates clearly. When communication is clear, decision-making is easier, emotional well-being is higher, and overall satisfaction increases. A PFAC is important for this study because it is time and money well spent for it is hoped that the overall patient-experience would be improved.
I am retired, had my own business, and now doing acting work. I joined the PFAC out of curiosity. I’ve had numerous types of surgeries from gastric by-pass to kidney auto-transplant so I was no stranger to medical experiences—good and bad. A PFAC is important for this study for patient’s surgery preparation. Information is a powerful and calming effect for me. I am convinced that knowing what to expect in surgery has/had a very calming effect on me because my anxiety pre-surgery was a positive for me. Patient’s getting their questions answered and feeling prepared is critical to not feeling overwhelmed.
I have a fairly involved medical history of significant medical events and injuries starting at 17 when I “blew out” my knee playing basketball. I had the knee replaced nearly fifty years later after eight knee operations on both knees. I had a full paralysis stroke at 39 and recovery to about 95% took a good ten years of regular and creative exercise after immediate medical intervention. Colon cancer was diagnosed about ten years ago and a portion of the colon removed. Then, my prostate was removed three years ago after advanced prostate cancer was diagnosed. After a regimen of radiation therapy, I am just now finishing a two-year course of Lupron for that. I am 70 years old this year. With as many serious conditions and medical interventions as I have had, I have experienced many versions of health care, both good and not-so-good. I joined PFAC because I feel compelled to contribute to the advancement of medical treatment and outcomes, especially for individuals of advanced age who may have had somewhat similar experiences or conditions. It has been a fulfilling and rewarding experience.