Co-Architecting Healthcare Transformation: How Patients and Families Will Shape the Future of Caring

The team at the Experience Innovation Network, part of Vocera, spent the past few months talking with patients and families who have experience working with health systems to drive improvement. We also spoke with health system leaders responsible for including patients and families in transformation.

Much of what we learned is in the report we released earlier this month: Co-Architecting Healthcare Transformation – How Leading Health Systems Put Patients and Families at the Forefront of Design. In the report, we covered how health systems build the infrastructure to include patient-family perspectives across more decision points. We examined the ways that patient-family partners and health systems can prepare for more effective collaboration. And we outlined approaches that health systems can use to broaden and deepen partnership opportunities.

But not everything we learned made it into the report. We heard heartbreaking stories of care gone wrong, aching passion to improve the care experience for patients and families, moments of profound compassion and the best of human connection, and cases of deep disconnect and failure to understand.

Looking back on the research process, I’m struck by the “us” and “them” divide that often seems to exist between patients and family members versus the healthcare system. The divide doesn’t exist because of animosity or antipathy. In fact, the vast majority of the system leaders we interviewed are actively working to break down this barrier. But system leaders are often pushing a boulder uphill because healthcare systems have been built to serve market, regulatory, and workflow goals in isolation from patient preferences, insight, and partnership.

Overcoming the Healthcare System’s “Antibodies to Change”: Three Mind Shifts

That legacy is hard – but not impossible – to overcome. As one interviewee put it, “The healthcare system produces antibodies to change.” The question is, how can we outwit those antibodies? Based on the research, I think a few mind shifts will pave the way to much deeper partnerships between health systems and the people they serve.

Mind Shift 1: Patient-Family Partners Everywhere

What most differentiates organizations that involve patient-family partners in all decision making and those that don’t is a choice to involve them – a choice driven from the top and reinforced by senior leadership. When at least one C-suite leader is willing to stop a process or decision that hasn’t involved patients and families, things change much more quickly than when patient-family partnership is optional.

Even when leaders take initiative and buy into patient-family partnership, it takes time to shift a culture. Leaders need to learn to listen to ideas that challenge their assumptions, to disagree respectfully and constructively, and to trust patient-family partners enough to expose organizational and individual imperfections. It helps to have an agreed-on set of goals and values, like Southcentral Foundation’s Operational Principles, to use as a mediating tool when perspectives differ.

Mind Shift 2: Get Intentional About Diversity

Almost all of our system interviewees acknowledged they want to expand the diversity of perspectives that inform their improvement efforts. The organizations that made the greatest strides had broken the mold of the traditional patient-family advisory council (PFAC). They’d gone out into their communities to intentionally seek under-represented viewpoints.

Leaders at Provincial Health Services Authority, for example, conducted a province-wide listening tour to shape the strategy and approach they would use on an ongoing basis to make sure patients and families would be part of their transformation efforts.

Across our interviews, two concepts stood out as forming the foundation of effective diversity strategies: access and trust.

Access involves accommodating the fact that a lot of people can’t participate in improvement efforts that happen during working hours, too far from home, in places that require expensive transportation or parking, or without some support for childcare. Language considerations, including support for deaf and hard of hearing or blind and visually impaired partners, also limit access for certain subsets of patients.

Earning trust involves recognizing that some groups have been marginalized by many social structures, including healthcare systems. It involves being prepared to hear hard truths and work constructively toward resolution.

Both trust and access require out-of-the-box thinking and leaders with exceptional empathy, listening, and problem-solving skills.

Mind Shift 3: Recognize the (Differing) Value of Patient-Family Partnership

There’s another angle on diversity that patient-family partners are far more aware of than system leaders are: varying levels of skill and expertise.

System leaders talked a lot about the importance of recruiting the right kind of patient-family partners to be involved in their PFACs. Yet we heard far more from patient-family partners that different partners bring different skills, perspectives, and expertise to the table.

These differences go beyond demographics, health experience, and condition. They stem from professional experience, experience with other improvement efforts, and personal talents and expertise.

Our patient-family interviewees were disproportionately people who have a passion for healthcare improvement and, often, extensive experience to go with it. Yet there’s still a gap in health systems’ preparedness to identify when an “expert” patient-family partner or an “average” patient-family partner will provide the best value.

Systems still seem to ask patient-family partners to be representative in a way that team members and leaders are not. We wouldn’t expect one nurse to represent all care team members, one environmental services employee to represent all operations roles, or one leader to represent all executive disciplines. Similarly, one patient-family partner cannot represent the breadth of skills, experience, or expertise of patients.

It’s not fair to ask an average patient-family representative to do a job that belongs in an expert patient-family partner’s hands. System leaders need to understand the role of an expert patient-family partner, the value they bring – and the value that’s worth paying for.

Toward Co-Architecting Healthcare Transformation

Despite the often Mars-Venus-like differences in patient-family partner and system leader perspective, there is cause for optimism. Both sides are passionately committed to improvement and to finding ways to work together to achieve it. Perhaps the looming specter of dot-com entrants intent on disrupting the healthcare status quo will accelerate partnerships. Or perhaps the foundation of partnership built through PFACs will provide a springboard for deeper engagement. Whatever the catalyst, patients and families have a wealth of expertise to bring to bear. And true partnership is the only path that will create systems, processes, and solutions that will lead to exceptional outcomes and an optimal human experience.

To all of the system leaders and patient-family partners who contributed their time and insights to our research, thank you! The work you do inspires us, every day.