Forget the Complaint Box: Why Experience-Based Co-Design is Better

Jacquie Dale, OneWorldInc, PatientEngagement, PublicEngagement

115451257As growing numbers of health care providers and policy makers embrace the notion that paying attention to patient experience contributes to improving patient health outcomes, various tools to assist in patient engagement are being designed, used and evaluated. One such methodology with a proven track record is Experience-Based Co-Design (EBCD)

What is Experience-Based Co-Design (EBCD)?

The simplest way to explain EBCD is to say it is a highly productive process for exchanging stories and information between patients and health care providers. It focuses on drawing out the experiences of patients and staff and bringing them together to find ways to improve the experience.

Until recently, most hospitals and health care providers have relied too heavily upon the complaint box as a way to understand the patient experience. Such one-way feedback often discourages the meaningful and dynamic exchange that might thrive if a well-crafted, thoughtfully designed process were in place. EBCD is such a process: if such processes help to reduce the number of papers in the complaints box, they’re working.

Steps in Experience-Based Co-Design

In EBCD, the patient experience is gathered through in-depth interviews, usually occurring in patients’ homes. These interviews are studied for key themes and are shared in group discussions with staff and patients alike. Through the dialogue that is established, health care providers and partners begin to understand, in very real and tangible ways, the patient experience of the health care environment. Observations and findings are further explored in small working groups and, eventually, Quality Improvement initiatives are identified and implemented.

What follows is a summary of the four key steps involved in EBCD:

Step 1: Capture the Experience

  • Starting Point. This involves establishing a certain amount of baseline data and observing the day-to-day operations of the clinical area that is about to enter into EBCD;Set up the structures to support the initiative, e.g. core team; patient group;
  • Storytelling. Interviews with staff, patients and families and other stakeholders is a critical component of EBCD. It is important to create a safe, hospitable environment for everyone being interviewed. Patients are typically interviewed at home.

Step 2: Understand the Experience

  • Distilling information from interviews. The results of the interviews are analyzed and explored for common themes. While every patient has a unique story, in most cases common themes become apparent fairly early on in the EBCD process.
  • Feedback events and group discussions. Staff and patients are brought together to share the feedback and learning from the story-telling exercise.

Step 3: Improve the experience

  • Co-design events and group discussions. This is where staff and patients are brought together to identify and prioritize specific Quality Improvement initiatives that will improve health outcomes, patient experience and the clinical pathway.  And then the ideas are put into action and tested.
  • Step 4: Measure the Improvement
  • Determining what and how to assess the impact and success of the initiative. This usually includes both subjective and objective measures, which need to be assessed through-out the project.  Understanding the impact can also help to sustain the changes made.

Much of the work with EBCD has been going on in the United Kingdom, but there are a number of initiatives here in Canada too. One of the largest is the Northumberland PATH program, based out of the Northumberland Hills Hospital in Cobourg, Ontario and funded by The Change Foundation. A team of evaluators, led by One World Inc is assessing the initiative which runs until March 2015.  In June, 2013, the co-ordinator of PATH reported that the story gathering phase of the program was complete. She explained that listening to local healthcare stories was proving to be instrumental indesigning and implementing e improvementsy: hearing personal accounts gives a much better picture of the true nature of the health care environment than could be obtained through a simple survey. And it seems to improve commitment – stories touch the heart and people respond to that and want to be engaged in positive change.. As humans, we respond to stories much better than we respond to quantitative data.

Not infrequently, EBCD can bring to the surface some of the smallest, seemingly insignificant details, but ones that have a profound influence on whether or not a patient’s experience is positive or negative. Are toilet paper rolls placed inconveniently for low-mobility patients? Is there a threat of injury as a result? Such small but significant details, many of which come to light through EBCD, speak volumes about the need for Patient Engagement to inform the health care system at all levels.

Desired Outcomes of EBCD

EBCD is resulting in enhanced clinical pathways that improve patient outcomes because they have been informed by the lived-experience of patients ( and staff). EBCD is a flexible and highly adaptable process that can be tailored to meet the needs of diverse clients and different situations across the health care spectrum, including areas such as cancer care, community care, inpatient units and mental health, just to name a few.

EBCD is a promising tool for Patient Engagement and Quality Improvement. It empowers staff and patients to make meaningful and lasting change, and it brings the first-hand knowledge and insight of the lived-experience of patients to the front lines of innovation in 21st-Century health care.

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