A Critical Focus on Consumer Engagement and Experience

On the Road in NSW and WA, Australia – May 2017

by Jason A. Wolf. PhD, CPXP

Reinforcing the Global Nature of Patient Experience

In my recent blog published while still on my visit to Australia this April/May, I reflected that in engaging in the expanding conversation on patient experience excellence around the globe, there is an emerging recognition that experience is an idea that transcends systemic or national constraints. While we cannot overlook the barriers that exist or the implications of policies or organizational structures in and across nations, we are also seeing a trend that recognizes and elevates the humanity that comprises healthcare at its core. As we acknowledge that healthcare is about human beings caring for human beings, some cultural considerations aside, globally we are all striving for the ideas of providing health and wellbeing, positive clinical results, engaging people with dignity and respect and ensuring the best in human experience possible within the limits we may find ourselves in.

This strong belief has been reinforced across On the Road visits I have now had to Canada and Europe to Latin America and now Australia. As we continue to look for both strength in commonalities and opportunities for learning in the distinctions we each bring to this work, this travel for the purpose of learning and sharing must be central to our work. As we identify, cross-pollinate and disseminate ideas, we reinforce a global collaboration, a commitment to sharing and ultimately shared improvement.

It was with this hope and its underlying perspective that I was honored to be invited and engage in two significant events in Australia. The first an invitation to engage in a consumer led effort in Perth, Western Australia (WA) and participate in their patient experience week activities and the second, a chance to engaged with the leaders of the health system in New South Wales (NSW) and participate in a leading global forum on patient experience excellence. These two events provided me the chance to see a significant cross section of the Australian system and while there is much more of the work in Australia taking place to explore, it highlighted the great commitment in this nation to quality, safety and service focused efforts to ensure the best in experience overall.

A second benefit of my visit was the chance to connect with three committed volunteer leaders from the boards and councils of The Beryl Institute itself, including Stephanie Newell from our Global Patient and Family Advisory Council, Dr. Avnesh Ratnanesan from our Resource Advisory Council and Dr. Karen Luxford from the Editorial Board of Patient Experience Journal. They represent an important commitment we maintain at the Institute in reinforcing our role as a global community of practice. This is reinforced in the year ahead by our first international Regional Roundtable in Hamilton, Ontario this fall and my participation in Patient Experience events in both Brazil and the Philippines later this year.

While I will not be able to share every detail of my almost two weeks learning from our colleagues in Australia, I hope to highlight lessons learned, insights shared and opportunities discovered. I too would be remiss if I did not express my appreciation up front for both the honor of the invitation to participate in these great events and for the commitment and time offered to provide me an extensive line of sight into how healthcare in both these state systems at the opposite ends of Australia are working to make the experience better for all the citizens they serve.

Celebrating Patient Experience Week in Perth

During my time in Perth, I was hosted by the Health Consumers’ Council (HCC) of WA, an independent charity (non-profit) organization focused on engaging and advocating for patients/health consumers. Led by Pip Brennan, HCC has taken a leading stand on bringing Patient Experience Week to Australia so it seemed only fitting to support their incredible efforts. While I will not provide an extensive documentation of the events led or coordinated by HCC, I think it is important to get a sense of what was accomplished during their 2017 Patient Experience Week effort. (I refer you to a great review of the overall events directly on the HCC site.)

The two major events in Perth included a Patient Experience Week Community Conversation which brought together healthcare consumers, providers and government to engage in the critical question of “What matters to you?” in your healthcare experience. This full day of dialogue and prioritization informed by a few speakers was an exciting and robust event. I can say in my travels I have not seen many, if any events, in which the consumers of care of a system were able to compile and present the key ideas they believed central to what matters to them collectively.

Through rounds of discussions, work groups and prioritization the collective group of participants helped identify seven core ideas. They included:

1. Transparency (what is happening? Individual > service > system)
2. Partnership (patients, consumers, carers included in decision making, service & system design)
3. Being listened to (having time for conversations and to ask questions, developing positive change from being heard)
4. Safety (that I and my carers feel safe, I’m treated by competent clinicians, that I know my patients feel safe)
5. Equity (avoiding stereotypes, respecting individuality and culture)
6. Choice (I know the options and I’m empowered to make them)
7. Person & Family Focused (that I feel like a person not a number, holistic approach, family focused)

This data then became part of a morning discussion the next day with leaders across the WA health system at a breakfast event hosted by HCC and the Australasian College of Health Service Management. The intent of this session was a chance to directly feed back the items identified (above) for reflection, reaction and conversation. Again, it was clear these ideas were not surprising, but rather reinforcing of what was seen as central to an effective overall effort in healthcare.

This was reinforced by the compelling story of my co-presenter, Dr. Simon Towler, a former Chief Medical Officer for WA. He shared the powerful story of his journey from clinician to patient (and back) and how this shifted his work and his perspective forever. His most profound and moving moment came when he shared that for all he knew about the science and delivery of healthcare, “It was the personal interactions that made the greatest difference.” He added while in most cases the quality was outstanding, he was most surprised to realize that at many points on the journey, he was alone.

This acknowledgement of what consumers have come to expect in healthcare, such as quality and safety, versus what they believe matters, is significant and was powerfully presented itself during my time in WA. I do also encourage you to read more about the details of the PXW Community Day including the summary report.

A bonus to my time in WA was an invitation by Child and Adolescent Health Service (CAHS) of WA and the team at Princess Margaret Hospital (PMH) to spend some time in conversation with their CEO Frank Daly on the implications for those working to define and address experience in their own organization. This was a particularly timely conversation as the team from PMH and many other services in CAHS were preparing to transition to a new and amazing facility – Perth Children’s Hospital. Though not yet occupied, this state of the art facility reinforced one point central to the experience conversation. That great things can happen when you engage your consumers in design and keep them in mind as you design and build new facilities. It also underlines the value that the built environment has on the overall experience in healthcare and while not the fundamental determinant of experience, can be a significant positive factor or detractor depending on situation.

The visit with the staff of CAHS again showed that those on the front lines of care struggle with many of the same questions when tackling experience. There are real issues of time, focus and priorities in today’s global healthcare environment and at the same time when we recognize experience is at the heart of all we do in healthcare we start to reframe these from impediments to realities to be tackled or even harnessed. That remains an opportunity for all in the global healthcare system.

The experience in WA helped to show that innovation and understanding can and must come from all corners of the system and must be encouraged, fostered and supported in order to ensure it does. We must also create avenues for listening, sharing and then taking action to enable improvements and change. The series of events in WA helped highlight the power of thinking and acting systemically as well and what that can do in helping us to achieve our desired outcomes. Thanks to all the folks in WA from Pip and Stephanie, to the teams at ACHSM and CAHS for making me feel so welcome out west.

A Systemic Effort and Leading Global Symposium – Sydney

After a great start in Perth, I crossed back over to the east coast of Australia to Sydney, NSW and a series of opportunities to learn from and engage with the organizations and people leading experience efforts in this state. My week was highlighted by two days at the Patient Experience Symposium hosted by a cross section of organizations tackling the work of quality, safety and service in NSW Health and inclusive of a broad range of provider, patient and family and system voices. As part of my visit I not only learned of the workings of the NSW system, but was able to visit Royal Prince Alfred Hospital to see many of the ideas and practices explored over the week at work.

During the week, I had the great opportunity to visit with, learn from and share thoughts with a number of the organizations central to tackling patient experience efforts across NSW. While I will not describe each one in detail, I will introduce each and underline a critical observation, that while no system is perfect, what I found in NSW was a comprehensive and thoughtful effort to triangulate and tackle patient experience as a true systemic issue. Some of this is driven by the very nature of the healthcare system in Australia as a federally supported, state-based government system of health delivery (a comprehensive overview of the Australian, and other systems can be reviewed via the Commonwealth Fund).

During my visit I was able to spend time with the teams from three central organizations. The first, the Clinical Excellence Commission (CEC), served as my primary host while in Sydney. Its function is to promote and support improved clinical care, safety and quality across the NSW public health system. I also spent time with the team from the Bureau of Health Information (BHI), whose function is to publish independent reports about the performance of the NSW public healthcare system. Finally, I engaged with the team from the Agency for Clinical Innovation (ACI), whose primary function is to work with clinicians, consumers and managers to design and promote better healthcare for NSW. These organizations along with a few others including Health Consumers NSW (a sister organization to the HCC in Perth) served as co-hosts of the symposium.

My conversations with each organization helped clarify both the distinction of their focus as well as the connection of their efforts to the broader picture. As quality and safety excellence, innovation and improvement and measurement come together, in fact I saw a great synergy I often find lacking in systems in which these points of focus do not work in connection. I know from my conversation even those in these organizations would admit they have work to do on their alignment and collaboration, but the intention and effort to create comprehensive lasting solutions for the residents of NSW is clear and certain.

And while each of these organizations’ call to actions may be distinct, much of what we discussed reinforced some common themes I see recurring in healthcare systems around the world. At a summary level, this includes:

• dealing with time constraints or better stated how to maximize or repurpose the time in healthcare to address a system that is fostering burnout and fatigue,
• moving from systems of compliance to those of co-production and co-design in true partnership with the consumers they serve,
• determining the right metrics to gather and then moving from simply reporting of data to taking action with measurable improvements, and
• driving innovations that not only meet the needs of the system or how we deliver in healthcare, but also address the needs and desired experiences of the consumers of care themselves.

The intricacies each of these organizations in NSW tackle were well exemplified in the very sessions of the Patient Experience Symposium itself. And the commitment and passion I experienced in the leaders and staff I had the chance to engage with was clear – from my host, Alison Starr from CEC, to Jason Boyd from BHI, to Raj Verma from ACI and the many others that made me both welcome and cared for my learning and journey, there was a clear and palpable shared purpose to ensure the best in experience for all they collectively served.

A Quick Visit to Royal Prince Alfred Hospital

While many a few-hour visit to a hospital could serve as a full On the Road, I was honored to spend some time at Royal Prince Alfred Hospital (RPAH), part of the Sydney Local Health District, with my host Alison Starr and share a few headlines of that visit here. Some of the core ideas in practice in the organization include the use of Interdisciplinary Rounds, Bedside Shift Report/Handover and the use of a comprehensive learning program called Essentials of Care, a framework which aims to enhance the experiences of patients, families, carers and the staff involved in the delivery of care through the ongoing evaluation and development of safe, effective and compassionate clinical workplace cultures.

Central to the efforts at RPAH and across the health district was the active inclusion of consumer voice. An active leader in this effort, Laila Hallam, helps drive PFCC efforts and works to engage and elevate consumer voice in the overall efforts of RPAH. An example of this work was around a shift in visiting hours from standard to patient directed as appropriate. Of equal importance, she offered was the expectations with which people come to receive care. The reality she uncovered is that there is a core assumption in coming to the healthcare organization that “we are safe”. The issues of safety arise when this expectation is missed. So instead people are looking at their entirety of their encounter and how it plays out. Ultimately they are looking at the overall experience communication, trust, engagement, etc.

This central idea was exemplified across our stops at the facility but a few key examples reinforce practices of value. Namely across both the NICU and the “Green” ICU (one a few ICU wards) after a commitment and focus on Essentials of Care (EOC) efforts were undertaken in both area to create great connection to family members. In the NICU, a parents’ website and handbook was conceptualized and implemented to provide greater connection and engagement from those parents or families of children. In addition, patient interviews were conducted to understand critical touchpoints in the process and to capture patient stories to learn from and share.

In Green ICU, they took similar steps all while trying to shift the stressful environment of the ICU to one that was family friendly and welcoming. This was conducted by providing more information and something so simple but significant as adding something beyond the standard required name badges which were hard to read with larger badges that make people’s names clear to see. What was evident was not just the application of practice, but the unwavering passion and excited individuals had for these efforts, most specifically Mimi the ward nurse leader who was excited by not just the actions they took, but the results they were realizing.

The efforts at RPAH could fill a full On the Road, but both my time there and the breadth of this piece leave room for these highlights. Suffice it to say RPAH is a developing itself into an exemplar institution in walking the talk of positive experience and the impact it had. Thanks to the team at RPAH for welcoming me for this brief but comprehensive visit.

Patient Experience Symposium – Sharing and Learning

As part of my time in Sydney, I was honored to keynote and participate in the 2017 NSW Patient Experience Symposium. A growing event over the last few years, it drew people from across NSW and beyond and is now what I would consider a premier global gathering for the conversation on patient experience improvement. What spoke to me most about this event was its fundamental recognition that quality, safety and service along with innovation and improvement are all linked in the patient experience conversation. It also represented a true and committed intention of engaging patient and family voice in engaging, sharing and learning.

You can see a full review of the event, including several plenary videos and access to presentation content via the symposium site. While nuggets abound in all the practical lessons and practices shared, what was clear was that the fundamental idea that patient experience is the human experience was a core idea. The issues organizations were struggling with to address from creating greater relationships with consumers and among teams, to ensuring literacy, access and understanding of care for better outcomes, were not unique in what healthcare is trying to address globally. While there are definitive systemic considerations, the core ideas at the heart of healthcare seem only to get stronger, more pronounced and as a result more important to our overall efforts to run healthy, effective, vibrant and outcome focused organizations that act in partnership with those they serve and support the needs of those working to provide care every day. These ideas are unwavering and remain true wherever I happen to look.

This idea was ultimately reinforced in the keynote offered by the inspiring and challenging family voice of Tim Blake in closing the conference. He provided a few simple, but significant points that I think ring true for all I have seen across national boundaries. In summary, his thoughts included:

• Patients are starting to behave as consumers in healthcare
• Recognize now much of healthcare happens outside the hospital setting
• I don’t understand what “patient at the centre” means
• Paternalism is culturally entrenched in healthcare and has implications for progress and innovation

These ideas Tim shared in many ways captured the themes of the conversation of the event itself as well as the critical opportunities we now face in addressing patient experience as a global issue. I offer a warm appreciation for the invitation and a big congratulations to the planning team for a patient experience event that now has a place on the world stage.

Continuing a Global Focus on Patient Experience: Lessons from Down Under

In reviewing my most recent Patient Experience Blog mentioned above, I realized I perhaps summed up this On the Road before I even wrote it. I shared the words of Jane Cummings, CNO of England who wrote in the latest Patient Experience Journal, “the global dialogue on patient experience will become even more important, as we recognise that despite differences in design and operation, the challenges our health systems face and the focus on what matters most to patients are shared.” I continued, “This recognition that we are moving to a macro effort, acknowledging the reality of our own individual systemic constraints not as impediments, but perhaps learning points to be leveraged is where opportunity calls us. In looking across systems boundaries and peeling back policy layers, we reveal fundamentals that rest solidly at the heart of the experience conversation.”

These fundamentals are the very ideas that comprise the definition of patient experience itself – from a commitment to positive and productive interactions, strong vibrant organizational cultures, a listening to and acting on patient, family or consumer voice and an acknowledgement that experience is not episodic or purely clinical, but reaches well across the continuum of care and importantly in the spaces in between. The reality of this On the Road for me was the questions we all bring to this work globally are consistent. This means the opportunity we have to address and solve them can and must be a truly collective, collaborative and global effort.

With that we must also honor and recognize the distinctions in which we operate while we search for common ground and common and significant solutions. One such distinction underlined the very nature of experience itself and was a tradition in Australia that touches the core of our humanity. At every opportunity in which people speak, present, open events or offer workshops, the people of Australia honor the traditional owners of the land. This is a significant statement of understanding that as residents of the land they are “borrowing” it from others. Not only do they acknowledge ownership, there is a recognition and honoring of elders past and present who hold the history, the tradition and the story. This is grounded in a history not unlike many other colonized lands, where indigenous people gave way to new arrivals. It honors history and all it may include good and bad. This repaying of respect of ownership and an acknowledgment of history and presence is not something I have seen in many other places around the world.

This idea “Welcome to Country”, is a powerful recognition that there are things at play greater than our knowledge or skills can afford and this can teach us a powerful lesson in healthcare overall. When we acknowledge that there is a “traditional owner” in healthcare itself – that patient and/or family member who has traveled the perhaps long, confusing, arduous and/or even painful healthcare journey – to the moment they find themselves face to face with a clinician or caregiver. At that moment, we can honor to choose all they bring and engage it or our own personal or system expertise, education and/or process can quickly shadow its presence. The latter while expedient, clearly leaves opportunities missed from engagement and understanding, to critical keys that could lead to better outcomes.

In all I learned from my journey perhaps it is this idea that resonates so powerfully. All of us in healthcare must listen to and acknowledge what is before us. We must be willing to hold our expertise in suspension (when clinically responsible) to create better experience and ultimately better outcomes. If we honor those in front of us, be they a patient or family member or partner, colleague or team member, we reinforce a clear emerging idea in this work. That patient experience is the human experience and in committing to that we can only ultimately do what is right for all involved.

The greatest of appreciation to all who helped make my journey to Australia possible and for all who took the time to listen, but more importantly share during my time there. This connection is a special and important one as we weave a global conversation on patient experience together. I am forever grateful for the learning and the memories.