Nothing About Us Without Us: Activating Agency Through Experience-Based Co-Design

By Michael Posencheg, M.D.

Dr. Michael Posencheg is the Associate Chief Medical Officer of Value Improvement at Penn Medicine and Professor of Clinical Pediatrics at the Perelman School of Medicine at the University of Pennsylvania. He is also an Improvement Advisor for the Institute for Healthcare Improvement, where he has been working closely with The Change Foundation’s Changing CARE project teams as they implement  change ideas through experience based co-design. 

In general, people don’t like change. We don’t like it in our personal lives, and we certainly don’t like it in our professional lives. What we do like, is to do what we know, and we find it personally fulfilling to keep doing what we know until we’re good at it. We’re creatures of habit.

So when change that will impact us is planned, and we’re not involved in the process, we find it unsettling, and the change is much less likely to succeed.

Change is necessary for improvement

But we need change to improve outcomes in healthcare. Without it, nothing would ever get better.

Our patients’ outcomes are created by systems – the combination of people, processes, and items working together toward a common goal. Paul Batalden, a leader in healthcare systems, said, “Every system is perfectly designed to get the results it gets.” If you want to get different results, you have to fundamentally change your system. Otherwise, you will do the same thing over and over again, and nothing will get better.

People react to change with fear and resistance

Change introduces uncertainty, though, and most people react to that with fear and resistance. What was once comfortable and known becomes now uncertain. This is especially true when we’re asked to do something different, but we’re not sure why and we haven’t been asked for our opinion about the change. When that’s the case, we’re much less likely to want to come along.

The Psychology of Change

The Institute for Healthcare Improvement (IHI) has thought long and hard about this problem.  In their recent white paper, The Psychology of Change1, the authors recognize that:

“Improvement Science has given health care improvers the framework and the skills to understand variation, study systems, build learning, and determine the best evidence-based interventions (“what”) and implementation strategies (“how”) to achieve the desired outcomes. Yet, health care improvers worldwide still struggle with the adaptive side of change, which relates to unleashing the power of people (“who”) and their motivations (“why”) to advance and sustain improvement — two commonly cited reasons for the failure of improvement initiatives.”

Furthermore, they state that the way to engage people in accepting and sustaining change is to “activate their agency” – that is, help people obtain the ability to choose to act with purpose.

To do this, improvers should engage improvement teams in each of these five interrelated domains:

  • Unleash Intrinsic Motivation
  • Co-Design People-Driven Change
  • Co-Produce in Authentic Relationships
  • Distribute Power
  • Adapt in Action

While all 5 of these domains and the principles they communicate are important, I would like to specifically mention two of them.

First, it is clear that extrinsic motivators like carrots and sticks have not been shown to consistently lead to change. The concept of unleashing intrinsic motivation involves providing a motivating reason for change, the why, using storytelling or public narrative. When you give the change a purpose, it is much more motivating than a reward.

Second, it is very demoralizing to hear about a change after decisions have already been made. The opinion of those carrying out the change (our staff) or are the object of the change (our patients) are so important to the process. In this way, you get a different perspective and, at the same time, motivate your staff and patients to be receptive to change. This is the principle behind the domain of Co-Design People Driven Change or, as I like to say, “Nothing about us without us!”

Co-designing change with those involved in it

I have had the privilege and honor to work with The Change Foundation and the four project teams engaged in the Changing CARE collaborative over the past year. The work of these motivated teams has been around improving family caregiver experience as they interact with the health system and improve the capacity of the health system to support them.

To accomplish this, they have used Experience-Based Co-Design (EBCD)2 to develop and implement their change ideas. On the surface, this approach may seem that it only involves co-designing change ideas. From what I have experienced working with these teams, the approach they have used truly embodies all of the key domains IHI has identified to activate agency.

From the first time I met with them in Toronto, I have been overwhelmed by the level of excitement and engagement. The energy around their change ideas and impact they have had and expect to have is contagious.

Do you know why?

Patients and their caregivers, providers, and administrators have all been involved along the way, co-designing interventions from initial conception, through testing, all the way to implementation.

Along the way, they have produced authentic relationships, distributed power, unleashed intrinsic motivation, and, lastly, they are adapting in action with each successive PDSA cycle.

To see how the EBCD approach in practice impacts all domains of the Psychology of Change has been incredibly moving for me.  It is no wonder that the experience of healthcare is changing in these partner organizations.

Always remember that co-design aims to involve everyone who is going to be impacted by the change.  In other words: Nothing about us without us!

1Hilton K, Anderson A. IHI Psychology of Change Framework to Advance and Sustain Improvement. IHI White Paper. Boston, Massachusetts: Institute for Healthcare Improvement; 2018. (Available at

2Donetto, Sara, et al. “Experience-based co-design and healthcare improvement: realizing participatory design in the public sector.” The Design Journal Vol 18.2 (2015): 227-248.

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