Patient Experience Forum

This past week, Board member Rita Radostitz and I had the opportunity to attend the Patient Experience Policy Forum (PXPF) in Washington, D.C. The goal of this new organization is to create public policies that will safeguard the patient and family experience, since it is well documented that the patient experience correlates with outcomes. The really unique thing about PXPF is their inclusion of actual patients and their families in the work at hand. It’s ludicrous but not a surprise that patients themselves have never been invited to the table in this way before. Kudos to the Beryl Institute and PXPF for taking the initiative to correct this, believing that “the interests of patients and families must drive all public policy aimed at improving the health care experience.” This conference was only the beginning, but it’s significant in that patient/family advisers were invited to sit alongside people who work in the field of Patient Experience.

To better understand the mission of this group, I’ve included a drawing which was done by a young patient and shown as part of one of the presentations at the forum. It captures so brilliantly the essence of the doctor/patient relationship today. The young patient sits atop a beautiful exam table, surrounded by her family—but the doctor is huddled in a corner of the room, both behind the patient and with his back to her, typing away on his computer rather than interacting directly with the patient. It’s a powerful and disturbing metaphor.

Whether we know it or not, each of us depends on good policy, as public policies shape practice. This was my first foray into policy work, and trying to understand how to convert good ideas into good policy was eye opening. I was part of a group whose goal was to begin working on policies that support healthcare professionals (doctors, nurses) in ways that build and bolster their capabilities and opportunities for human connection in medical settings and with patients. This is relevant to Talia’s Voice (and to me personally as Talia’s mother), as I believe that external stresses on physicians and nurses are real (pressures to be ever more efficient, frustration with the electronic medical record, anger and frustration about the way insurance companies have their hands in every aspect of medicine, etc.), BUT—and this is a significant but—even if you remove these stressors, we would be left with many doctors, nurses, and providers who do not understand how to communicate with their patients. We must address this glaring problem if the “patient experience” is to improve. I wanted to reinforce this notion because it’s easy for it to get lost when the external pressures are wearing so heavily (and legitimately) on healthcare professionals in the current climate.

We had very little working time within our groups but I did speak up—and truly, Talia’s death is what gave me the courage to do this in a setting that was unfamiliar to me and definitely took me out of my comfort zone. Mostly, people working in the field were very unified in their goals and in the agenda, which I certainly appreciated. Still, there was an all-too-familiar ring to the dismissiveness a doctor in the group took with me, like I just don’t understand how things really work. In fact, I do. The absence of my daughter by my side is the proof. And since her death was due to many, many moments of poor—or no—communication from healthcare professionals, my ire goes up when I’m summarily dismissed by somebody in the field. I did speak up to say so, and felt support from others in the group, and we reworked some of the language we used to address what is getting in the way of healthcare professionals’ engagement with patients and the human connection.

Still, I believe that any organization that brings together patients and doctors has to go the extra mile to support the patient in that relationship, especially when the power in the system has long resided with the physician. I do believe that PXPF is an organization dedicated to getting this right, because their primary goal is to recognize and support the care of patients and families. I really appreciated the people there for that!

Rita attended a group working to create ideas for policies that will reduce the disparities in care for marginalized and vulnerable populations. Talia’s Voice is committed to helping to make hospitals safe for all, so it felt important to be present and represent those who can’t even access the system equitably, particularly immigrants, people of color, those in lower socioeconomic-economic brackets, or who are LGBTQ (to name a few). Communication and listening skills are critical if people from these groups are to get good care. This past summer, my niece pointed out that women should perhaps also be considered a vulnerable patient population, given how much of the current system was designed and defined by and for men, and relies on values that are often condescending toward women. Yes, many more women are healthcare professionals themselves, now more than ever, but the structure in medicine has historically put “men who know” in charge of women who (supposedly) don’t. That attitude is inherent in the culture and is often communicated nonverbally—it is one of the unspoken rules still at play, with the implicit idea that the expert physician knows best. Helping women gain a voice in their own care is critical. I would say that people with diseases that are not well understood also often find themselves marginalized, as well.

This forum was just a beginning point, and our progress reflected that. But the goals are laudable, and I’m glad to be participating. Our work will continue over the next months, and we’ll see how far we can go. It was interesting to hear from people who work in public policy, and to make some contacts with people at AHRQ (Agency for Healthcare Research and Quality), who are dedicated to the science of evidence-based research about what is and is not working in the medical field today. We at Talia’s Voice will be in touch with them as we explore where to focus our own work, and I’m happy now to have faces to put to names.

I know that the PXPF is looking for patients to participate as they continue to refine their work. I will be in touch with them and will report back how you can participate as a patient/family voice.


1 Comment

  1. Your own voice shines through in all of the clearly and beautifully expressed writing on this blog, Naomi. I applaud you and Jeff for the extremely important and groundbreaking work you’re doing in the name of “Talia’s Voice.” Sending love to all of you.

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