Co-creation with patients and doctors

During the 1960s in Scandinavia there was a growing demand for greater consideration of community opinions in major decision-making and so cooperative design was born. Since it’s conception it has evolved into what we now know of as ‘co-design’, a system of thinking which, according to C. West Churchman, "begins when first you view the world through the eyes of another."

Over the last 40 years this approach has influenced urban, community, landscape, product, graphic and software design. One of the final areas where co-design has not been fully embraced is in healthcare – a generally conservative and heavily hierarchy based industry where providers have traditionally assumed that doctors or patients should have little involvement in product design. In this environment the user is hardly ever the customer, therefore providers only have to sell their product to NHS payors based on cost or efficiency arguments not usability, likeability or design. Once sold and integrated many of these healthcare IT systems become difficult to remove or replace, regardless of poor user feedback or low use.

In reality this is a missed opportunity. A move towards digital health holds the potential to dramatically improve healthcare and positively impact people’s lives. When designing a product for a patient it’s important to understand their relationships, fears, dreams, thoughts, attitudes, priorities, motivations and frustrations. To gather the proper feedback, we need a powerful toolset that will help generate ideas and materials for analysis. We also need user-testing skills to be able to ask the right questions at the right time. End-users are probably the best experts of their own domain and should be actively involved in the design process; we need to learn how to work with them as partners rather than using them as information sources.

In healthcare multiple users are often cross-linked, sharing or overlapping user experience. For example, a doctor and a patient with a chronic disease both need interfaces to interact with, both spend a lot of time in hospitals, perform routine tasks, and make decisions, but their experiences are very different.

In this case, observing a user in a real-world environment and working together to make the user’s experience more pleasant will assure an optimally designed product.

So how does co-design work? Which steps do you need to take and what role does each play?

Working with end-users begins with an introduction to establish a certain level of credibility and let users feel safe communicating. Then the design work can begin. Afterward, it’s time to demo some of your co-working results so the users understand how important their contribution is. This means at least two things:

1. You may need a few sessions to cover all three stages

2. When selecting co-design tools, keep in mind which stage you are selecting them for (i.e. a motivation matrix might not be the best choice for an intro session, but design games or mind mapping can easily be used right from the start).

Participation in design can be divided into the following activity types:

· Sharing previous experience and available knowledge
· Generating new ideas and concepts
· Analysis
· Interpretation
· Evaluation

It is useful to define which types of feedback are more valuable in each case and select appropriate tools to gather this information, when preparing to co-design. Let’s go through some simple cases to see this in action:

Starting from scratch…

There are no users yet, just the start of an idea so the first step would be to develop character profiles with stakeholders. These people will not be able to share previous experiences about a product that doesn’t exist yet, but they can be asked to interpret existing information and generate some ideas and a concept, using affinity diagrams, mind mapping, and group sketching. Once an initial idea about the service is conveyed these ideas can then be transformed into IA and functional requirements. Now you have a good basis for wireframing, prototyping, and visual design. Storytelling would also work, which would help generate storyboards form which IA and functional requirements can be created.

…re-designing an app

So what if you already have an app? It works, but doesn’t solve all the issues it’s supposed to or maybe it looks old-fashioned or isn't logically structured?

Since you first created it your users’ processes and goal prioritization have changed so even though you have an opportunity to work with real and current users, many of them may have been using the app for a long time. Design games can be a good start for rethinking the product and generating new ideas. Affinity diagrams can be used to analyse information that has been gathered and mind map the functionality and content. Concept can be polished by rough prototyping.

These tools and approaches help to visualize and vocalize feelings, thoughts, problems, and ideas so they can be analysed, structured, and prioritized. That way we obtain critical information from the end-users, bringing more value to the project.

In healthcare we have two main users: the doctor and the patient. When designing for a hospital or a doctor, we know that the end-user will be trained on using the product. There are also regulations concerning what information should be represented and how it should be presented. The industry connects numerous areas like medical practice, insurance, inventories, logistics, and management.

Hospitals and private practices are adapting electronic systems to run portions of their business, requiring features and tools to be combined in order to satisfy the needs of the patient. This is where different domain specialists can help design complex services while not making them too complicated.

On the other hand, when we design a product to be used by a patient, the product should be more simple and more aesthetically pleasing. People should feel comfortable, confident, and safe while using it.

Needless to say, there is a community behind a patient. He or she most likely has family, parents, children, loved ones, and friends. They make a very important part of the term “patient”. They are interested in understanding the status of the patient’s health and being updated frequently. Because of this, they have a stake in the product and are often willing to help design the best product for the patient.

At Geneix we use a co-design approach in all our product development, pharmacogenetics is a complex field where our users have varying levels of understanding, expertise and interest. Working with physicians in this way can be a long process as each doctor has slightly different needs and opinions however the final product will hopefully tailor to the majority and be intuitive to use.

When co-design is used, everyone who participates becomes an advocate for their own needs and goals, and the end result is more suitable for everyone. In the long-term as patient empowerment grows and physicians become more digitally savvy, providers may find it increasingly difficult to justify products that have no co-design element. As users catch-up with systems the demand for digital health tools which can stand up to the usability and design standards of other industries will increase and hospital payors may find it’s time to look elsewhere for innovative solutions.