“People are complex and people are messy”

By Oisin Kearns, Research Assistant, Care Team

How well do you think you know a certain group of people? Have you ever tried putting yourself into their literal shoes? Well let’s not go crazy here, but this has been the aim of some designers and researchers. This ‘knowing’ of certain groups of people can be obtained by an empathic understanding or through firsthand experiences. The ARCH Patient-Centred Design – Industry Workshop was explicitly aimed at exploring the use of these empathetic techniques. Using the discipline of anthropology and its reliable toolkit of ethnography, the workshop presenters Patrick Slevin and Brenda Reginatto covered a qualitative approach to help industry members understand a patient’s perspective and its value in designing more meaningful and tangible outcomes. After, a panel discussion with speakers Marie McCarthy (Director of Product Innovation, Information Technology, ICON), Eamon Costello (Co-Founder and CEO, patientMpower) and professor Brian Caulfield (Principal Investigator, ARCH and Director INSIGHT UCD), which was followed by a practical session of journey mapping with both patient and industry members.

Speaker Contributions

The first half of the workshop sought to show industry members how incorporating a patient’s mindset could reveal more meaningful insights for a product’s design. Through an empathetic approach, this mindset could be examined by looking at a patient’s set of beliefs by asking questions like ‘how does the patient see themselves after their diagnosis?’ and ‘what are a patient’s aims and plans, and what does the patient hope or desire for in their future?’

Yet before one can come to understand this mindset, the workshop highlighted that each individual brings a set of individual biases that influences our perceptions and views. Noting this point, the workshop underlined the following guidelines for industry to consider:

  • Admit you have a conditioned view of the world which is different from that of others.
  • Try taking a beginners point of view that is unconditioned to our own set of biases. In doing so we can then break down a participant’s actions all while paying attention to the context in which that action is happening. By following this approach we can then see the action’s most simplistic meaning and make it comprehensible.

By bringing empathy to the early stages of product development, designers can step into the shoes of patients and discover a deeper understanding of the user’s needs, but also to help remove their individual bias from a product’s design.

Workshop attendees highlighted industry’s concern in trying to incorporate patient-centred design (PCD) into early product design as something that is easier said than done. They noted:

“You have to fight your corner, convince people to do it – trying to do it when you are in college is fine, but a company’s time is so finite.”     

“Opportunity costs – you can just try by pass early validation.”

“It’s hard for small companies to resource it and harder for big companies to agree to it as well.”

From the comments made, the incorporation of PCD into industry practices faces many internal pressures and negotiations. Industry’s main concerns centred on the perceived risks involved in doing PCD. These include negotiating with other industry members who may not see the value in implementing PCD, the possibility of failing to gain any tangible insights, the extra time that may have to be allocated, and the potential extra costs involved. Due to this, industry members conveyed that they would instead forgo PCD in their design process and just simply risk the applicability of their product. Ultimately then, time, money, resources, and the multiple decision-makers involved in the design process become the key barriers for industry to adopting PCD. These concerns made by industry therefore indicated a desire for a rapid method that suits their early design phase.

Qualitative Methods

With this in mind, the next session of the workshop focused upon examining ethnographic techniques to help industry members try orient towards PCD. These techniques included:

  • Performing observations of the behaviours, practices, attitudes and perceptions of research participants.
  • Themed interviews that followed a topic guide.
  • Asking patients open-ended questions that are designed to allow openness and flow for the participant and help in avoiding biased leading questions from the interviewer.
  • Coding: this involves organising the data gathered from observations and interviews into themes and then subdividing the data in these themes into subcategories in order to identify similarities and differences between participants’ opinions and perspectives.

From these techniques it was proposed that industry would be able to interpret meaning, and formulate a story which would lead to actionable insight in their design.

Presenter Brenda Reginatto reinforced the importance of industry incorporating a qualitative approach to PCD and what is actually at stake for them if they don’t incorporate it into product design. Her points were as follows:

  • Qualitative methods allow large amounts of complex data to be filtered into comprehensible and actionable outcomes.
  • Mitigate the risk of spending more resources on solutions that might not be adopted by those who they’re aimed at.
  • Being able to accurately identify patient problems and create more meaningful and focused solutions.

For Brenda, PCD is not about asking patients what they want. It is about understanding their experiences and the challenges they face. It is then up to industry to develop solutions based upon these insights.

Journey Mapping

The second part of the workshop focused on the attendees using the ethnographic technique of journey mapping. Attendees were to work alongside patients in trying to uncover the key points in a patient’s journey all while noting the high and low points of their journey. Through journey mapping the patient’s experience, attendees were to take something complex and turn it into something easy to understand. This visual representation was to show the value and depth of information that could be obtained through using qualitative techniques.

Patient Centred Design Wkshop.2

The above and below images are examples of journey maps that were produced by the workshop attendees. Both journey maps show the different levels of information that can be obtained. This can be from what a day in the life of a patient looks like (below image), to that of an overview of the whole patient journey (above image).

Patient Workshop

At the end of the exercise all groups had the opportunity to discuss their findings. Some of the common issues highlighted by patients included:

  • An individual patient’s requirement to be organised and plan ahead of all their daily activities;
  • Having to learn how to be the “new them”, with no to limited support with the transition;
  • Learning to manage all their new medical and lifestyle needs;
  • Developing a support network;
  • Trying to regain a sense of their identity and understanding the disruptions they may face daily as a result of their condition;
  • How can they manage and resolve those disruptions;
  • Rehabilitation after care, the need to order and redefine their sense of self in order to empower themselves and to move to an idea of what they consider normal;

“You need to be sensitive and mindful of where they are in their journey, they may not be able to articulate everything without getting upset, and you need to also respect their choice to talk about certain things and what they don’t want to talk about.”

“There’s no adequate support – you have sense of being left to manage on your own after finishing treatment.”

“The level of organisation required, having access and the energy to complete your daily tasks.”

These learnings from the journey mapping highlighted current concerns and challenges facing patients. Yet through empathy and using ethnographic techniques for decoding processes, the patient journey map became a grounding tool for industry members in gaining the patient mindset, but also a guiding map of the journey steps involved from patient diagnosis, adjustment to developing support and gaining knowledge.

Taken as a whole, the workshop helped to build an understanding of how industry members can incorporate anthropological insights and methodologies into their early designing phases. Using techniques like journey mapping can bring more visibility to a ‘day in the life’ of a patient as well as their overall journey. By putting yourself into the shoes of those who you’re designing for can then give you a unique perspective and an appreciation of the usefulness of using qualitative methods in design. In doing so, companies are more likely to develop useful and user friendly products and avoid wasting resources in solutions that patients might not or don’t want to use.

Following on from this we got great feedback from industry members and patient participants confirming the usefulness of incorporating user insights into their practices through ethnographic methods.

Industry participants comments:

“I liked the design approach you explained for which it is needed to understand the operational user context of the device. Such user centric approach where the designer needs to get rid of assumptions about the user’s requirements by having a direct open conversation with them to figure out how the device-solution-service fits better, and maximise  value in their lives, and user-device engagement.”

“The practical session – Journey mapping with a patient. I thoroughly enjoyed this session and was amazed by how much information you could glean in such a short space of time by talking directly to a patient. You get a real insight into the patient’s pain points, needs and wants. It’s a very powerful mechanism to validate initial thoughts and ideas for products.”

“At first, I found the session really challenging as I was hesitant to ask certain questions, but the patient was very open about her challenges and made me feel at ease. I felt I could ask her anything! This I found to be vert motivating.”

 

Patient participant comments:

“It confirmed my belief in the great value of involving patients in design process”

“Had a great experience at previous Arch events. Also felt it was important to help industry see the value of engaging with patients” 

 

You can contact Oisin on oisin.kearns@ucd.ie. Check out our website for more information about Oisin’s research interests.

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