Aug 12, 2019
A nursing perspective on patient advisory councils
What We Learned
- Nurses still have work to do to understand the patient perspective.
- Because of their assumptions, nurses are not the best choice to represent the patient’s point of view (even though we make great patients!).
- Organizations need to understand that patient engagement is more than a box to tick off when consulting on health care delivery.
Over the last several years, healthcare leaders in BC have come to recognize the necessity of including the patient’s voice in choices regarding resource allocation. Much of this work is being driven by the International Association for Public Participation Canada (IAP2), based on the core value that those most affected by a decision have a right to be involved in the decision-making process. The BC Ministry of Health’s (MOH) Patients as Partners web page defines patient engagement as:
[an initiative to bring] person- and family-centred care to the forefront of health care through collaboration with patients and their families, non-governmental organizations, funded partners, regional health authorities, and a variety of health-care providers. Its partnerships work to provide leadership, tools and resources that help integrate patients’ and families’ voices, choices and their representation into decision making, which can positively affect people’s health and health-system improvements.
In 2009 the Ministry of Health (MOH) had heard clearly from the public and sections of health care that there was a need to begin to include the patient’s voice in health care resource allocation decisions. Responding to this need the MOH created the Patient Voices Network as part of its Patients as Partners strategy. The idea was to match patient volunteers with healthcare partners in the planning stages of healthcare service delivery in an effort to improve quality of care while meeting the need to include the patient perspective mandated by the MOH.
How did the Patient Advisory Council get started?
The hope was that by including the patient voice in problem-solving and decision-making in the BC healthcare system there would be noticeable improvement in outcomes. The inclusion of the patient voice was intended to provide new perspectives and greater understanding to healthcare providers by encouraging patient-focused decisions that would help craft more patient-centric solutions to the delivery of healthcare. Reaching those goals is still a work in progress.
In early 2013, NNPBC put out a call through their networks for patients who were willing to volunteer for a new Patient Advisory Council (PAC) being set up by NNPBC in conjunction with the BC MOH’s province-wide mandate. After a review of applications, a committee of 10 volunteers was formed and a new PAC process was embarked on. But it didn’t work out. Many of the individuals on this new committee were not a good fit for the work for various reasons, including the inability to commit to the time requirements and a poor understanding of what was actually required of the group. As a result, the newly minted council members struggled. This, along with the burden of limited clerical and practical supports, forced the disbanding of the initial committee with little to show for the work.
In 2015, NNPBC rebooted the program with a new call for committee members. This time they had strategies in place to address the issues that plagued the first council, such as appointing staff and patient co-chairs, providing terms of reference prior to the first meeting, and assigning dedicated NNPBC support staff to ensure that timelines were met.
Despite these efforts, the PAC ran into other barriers. Of the six volunteer patients who made up the committee, all were women; the youngest two were in their 40s and the rest older, with four of six being retired nurses—clearly not representative of the patient population. Why was this a problem? It seems that nurses are always nurses first and patients second. So when it came to viewing issues through the patient lens, they tended to get caught up in what they believed about nursing instead of trying to see the problem from the perspective of a patient with no healthcare experience. These conversations detracted from the fundamental question the PAC was asked to consider: How do we shift the concept of patient engagement in healthcare from being a token perspective and start to integrate it in a truly collaborative and empowering way?
In attempting to answer that question, we looked at some of the barriers that patients face on their healthcare journey. Which of those barriers did patients see as important to address? The answers surprised us.
Interestingly, not all of the issues were negative. One of the positive opportunities that the PAC identified was the ability to share their stories—to be heard, to be understood. Even if we couldn’t “treat the story,” they wanted a chance to tell it.
Drawing from this feedback of patients as storytellers, NNPBC developed the Listening to Learn campaign as a way to begin considering how we might spread the stories told by our patients and share them with nurses. But the campaign was also the foundation for a movement toward creating a safe place where stories and ideas could be shared as teaching tools.
What did the PAC have to say?
The number one concern was parking. Questions included, “Why do physicians have hundreds of reserved parking spots in front of the ER, when patients (who are not always very mobile) have to walk a long way?”; “Why do hospitals charge for parking?”; and “If I arrive late for my appointment and have to pay for parking, do I risk missing the appointment to fill the meter, or do I risk a ticket to keep the appointment?” Parking may seem like an odd issue to make top of the list of things to be fixed in healthcare. We might have expected wait lists, lack of access to a family doctor or nurse practitioner, or any other myriad of healthcare-centric issues. But the strength of the PAC is that their voice is not our voice, and we committed to listening.
What else made the list?
Wi-Fi in hospitals was a close second, but not for the reasons you may think. Families don’t want to stream the latest season of Game of Thrones while they wait for an update on their loved one. Instead, Wi-Fi has emerged as a critical link for families to access support. FaceTime, Skype, WhatsApp, and other Internet-based apps are the way many patients communicate with family and friends, who may be out of province or even out of country. Why isn’t Wi-Fi free, especially when the cost to the hospital from the service provider is minimal? (Good question!)
Other top-of-mind issues included mixed-gender rooms. Patients understand that hospitals are crowded, but there are still people who are uncomfortable having to share a room with strangers of the opposite sex. One PAC member put it this way: “If two rooms side by side are mixed, why not just relocate a person or two?”
Hallway nursing came up a lot in the feedback as well, with patients asking, “Why are nurses impatient with me if I’m stuck in the hallway? Do they think it’s my choice to be here?” Patients understand that the system is maxed out, but they are concerned that hallways and closets are being used as a solution, with no forward planning on how to end that situation.
Patients also wanted to know why the system did not support more information sharing. This is an interesting idea, one that deserves a closer look. The PAC suggested adding Patient Navigators to the care team to help guide them through the system. I was caught off guard by this need because, up to that point, I had assumed that I, as the nurse, was in the privileged position of supporting patients through their care journey by explaining the process and what to expect. Clearly, my actual practice does not reflect my presumed practice. Rather, it seems that I am so busy with other aspects of care that the fundamental concept of speaking with a patient about what to expect has fallen by the wayside—a deeply distressing reality for me.
Although all of these themes are important and deserve consideration, the patient-focused issue that resonated the most with me was the description of “stigmatizing” and “othering” patients. The PAC shared their personal stories about how they had experienced nurses say, “Don’t worry about him right now, he’s just a junkie,” or how nurses referred to patients in their care as “their” patients. Patients said, “Stop calling us your patients. I am not ‘yours’; it’s insulting when you say ‘our’ or ‘my’ patients.” Ouch! These are hard statements to hear. Like many nurses, I have in the past referred to “my patient” in my day-to-day work without ever considering how that assumption sounds.
How did NNPBC respond to the PAC’s comments?
They started by assigning a dedicated staff member to support the PAC, providing a single point of contact within the organization. This contact person would then represent the patient’s voice within the wider organization. As a result, the issues and suggestions brought forward by the PAC could be incorporated into the other work of the association. That helped patients feel connected to the organization because the dedicated staff member could circle back to the PAC to report on how their recommendations were being integrated into day-to-day operations, creating a self-fulfilling feedback loop.
NNPBC also worked to incorporate the patient voice at leadership tables—not just at the board level, but also the at the level of front-line leadership , reminding healthcare leaders that most of the time, we don’t consider how events affect patients. Patient inclusion was achieved by inviting a member of the PAC to sit at as many of the tables and working groups as was practical. Despite this progress and the explicit acknowledgment that presence increases voice, NNPBC has still not arrived at a place where we always remember to consult with the PAC before we go public with campaigns, position statements, and strategic planning initiatives. There is still work to be done in making patients part of all the conversations, instead of including them as an afterthought or simply checking a box.
This process is challenging, but it has its rewards. When patients do join us, and we take a moment to listen instead of directing the conversation, we get a chance to stop assuming we know what’s right all the time and start listening to what patients have to say. Is it so difficult to hold back for a few minutes and not get defensive? We all want to defend our colleagues when someone says they are doing something wrong. But part of listening is opening ourselves up to criticism and accepting that we can all learn.
How do we incorporate the PAC’s recommendations into our practice?
I think we can start by agreeing to end the “othering” of patients. Let’s come together and create space for them to tell their stories. Let’s be more flexible in our concept and delivery of nursing care. Let’s provide meaningful opportunities to lead and create a sense of ownership for patient partners. We should be asking for, and responding to, continuous feedback from their perspective. Nurses can strive to be more authentic throughout the process by understanding that it is sometimes okay to sit in discomfort without needing to have all the answers all the time.
We say it, and hear it, often in healthcare. So now, let’s really hear what is being said when someone says, “Nothing about me without me.”
As nurses, we are in the perfect position in the system to bring power to this perspective. If we are successful in our attempts, we will all be better for it.
The authors thank the Nurse and Nurse Practitioners Association of BC (NNPBC) for their financial support of this work. They would also like to formally acknowledge the great work done by Patrick Chiu, Professional Practice Advisor for CARNA who researched and wrote some of the source material for this article, which is based on a presentation given at the 2018 CNA biannual convention.