As 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.

Involving citizens in health care decisions is vital for a number of reasons. As voters, taxpayers, citizens and recipients of care, they can contribute vital input regarding their priorities for, and needs from, the health care system.

The citizen perspective is invaluable in shaping the role and place of social values in decisions about our health care system. And it is complementary to Patient Engagement, which can provide the lived experience of patients and their priorities. Even though citizens are all patients at some points in their lives, in citizen engagement individuals are called on to wear a citizen hat and to think about what is important for the public good.

While there have been numerous changes and innovations to health care in Canada through the years, our health systems still depend to a great extent on inherited, top-down models of care. The shift to patient-centred care (aka person-centred care) and increased Patient Engagement, as a means of improving health outcomes, are relatively new concepts that have only just begun to take root.

This reflection was written by ABCD Researcher Dr. Gwendolyn Blue of the University of Calgary and Jacquie Dale.

Please find the original post on the Alberta Climate Dialogue blog.

Water in a Changing Climate was the third installment in Alberta Climate Dialogue’s community deliberations.

In partnership with the Oldman Watershed Council, ABCD designed and convened a one-day citizen deliberation on climate change and water. The event was held on February 22, 2014, at the University of Lethbridge. This facilitated deliberation consisted of a diverse group of 33 invited participants who, following an application process, were selected on the basis of gender, age, occupation, location of residence as well as views on climate change.

We evaluate aspects of our life and work every day: we might start a new fitness routine and check out our progress in six weeks, or switch to a different software program and then evaluate how effective it is, or where we are with it. We evaluate the minor and the major to answer a simple question: Did it work? Then we ask more complex questions: If it did, what made it work? If it did not, what prevented us from achieving the desired outcome? In the field of public engagement, evaluations can be a powerful tool for learning and improvement. 

Evaluations are not one-size-fits-all. The appropriate type of evaluation depends largely on the purpose of the evaluation.

A formative evaluation focuses on ways of improving and enhancing programs. They are often done through a quality-improvement lens, and may be process-oriented or impact/outcome-oriented.

Formative evaluation can be done at any stage of a program. It can take place as the activity unfolds and provide an opportunity to take corrective action in real time to improve outcomes.  It can also include a phase completed at the end of the project to help assess and document lessons learned for next time.

A summative evaluation occurs at the end of a process and focuses on outcomes – e.g., did we achieve what we had intended?  Such an evaluation judges the overall effectiveness of a program. It often used to make decisions about continuing or terminating a program or project.

Public engagement initiatives vary in size, scope, time frame and purpose, from projects with tens of thousands of participants around the world to panels involving 10 citizens from across town. The objectives may be to effect a change, to do things better, to foster involvement, to increase knowledge and/or to build common ground.

Whatever the intent, the ultimate goal is to make a difference. The challenge lies in measuring this difference. What have we accomplished? What difference has the engagement initiative made? Is one kind of engagement better than another to achieve certain goals? In the public engagement field, sometimes a lack of comparable data makes it difficult to answer these questions. For example, a group might be doing a citizens’ panel in Edmonton to advise city council on policy. It has chosen one set of criteria for evaluation. But another group doing a citizens’ panel in Guelph might have a different set and it becomes difficult to compare the success and achievements of the two panels (even allowing for the importance context can play).

As a professional field of endeavour, public engagement is relatively new. In the past, it has not been a priority to collect and disseminate evidence on the impact and efficacy of engagement initiatives, but that is changing. By combining qualitative evidence with quantitative data we can determine to what extent  an initiative was successful, if it had the impact we wanted and how it could be improved upon. There is so much that can be measured that a key challenge is making the evaluation as practical as possible.

Often, when we think about  evaluation, the number of questions we have multiply rapidly as we brainstorm what we want to find out and discover. As we go through the process, the list of items that we want to measure and examine outgrows the time and resources available.

Currently most public engagement is done because morally it’s the “right thing to do.” If you are affecting people’s lives, you should ask them about it. But can we do more? Can we demonstrate the value and impact of public engagement – the difference  that it can make?

This is one of the biggest challenges we face in the field of public engagement. There is an abundance of anecdotal evidence that points to the efficacy of our work, but concrete, measureable data that demonstrates impact is scarce. Planning and building frameworks for evaluation is essential to the long-term success of public engagement in order to collect the comparable evidence we need to demonstrate the value of public engagement to participants, communities and funders.

With meeting spaces at a premium at public, private and non-profit organizations, work teams and volunteer committees often have to make do by meeting in tight quarters. While this may be necessary for regular activities, when strategic thinking or challenging conversations are needed, it can be very important to provide a physical meeting space that will encourage participants to engage in respectful, productive conversations.

Studies have shown that the physical set-up impacts the outcome of a meeting. For example, a group of researchers from the American Psychological Foundation and the Swiss Federal Institute of Technology conducted a study in 2011, in which they found that natural light can help alleviate headache, fatigue, and other symptoms associated with harsh artificial light, as well as to increase alertness and productivity.