My experience as a user experience researcher in healthcare
Since October 2017 I have been working at Meaningful Interactions Lab at KU Leuven in Belgium as a user experience researcher. Two of my projects were in the healthcare domain and in this article I will share my experiences.
Both projects created self-management applications for patients to manage their condition and treatment. The first project (PreLiFe) was done together with the fertility clinic at the University Hospital in Leuven, Belgium and we developed a self-management platform for people getting IVF treatment. To inspire the development of the platform, I interviewed caregivers and people with fertility problems and I did observations in the hospital: I sat in on consultations between caregivers and people with fertility problems and I did observations in the fertility lab.
The second project (HeartMan) created a self-management application for people with congestive heart failure. In the context of this project I evaluated the user experience of the platform after a clinical trial of four months: I visited 10 people at their homes and I interviewed them about their experiences with the platform.
I enjoy working in the healthcare domain because I find that people are quite open to sharing their experiences and stories: In many cases they welcomed me into their homes with open arms.
Further, for some people, working on a meaningful topic gives their work and research more meaning: You are making an impact and helping others.
Finally, healthcare is an exciting and challenging field. As a researcher you are exposed to topics that one cannot experience in everyday life or in a regular environment. For example, for the PreLiFe project I did observations in the fertility lab. Here, I saw how the IVF and ICSI procedures (a specific type of IVF) are carried out: For the ICSI procedure, sperm cells are inserted into egg cells using under a microscope and this is how a potential new life starts.
However, doing research in healthcare is different from doing research in many other contexts. Healthcare can be a challenging environment for designers and user experience researchers. Some of the challenges are: ethics procedures, getting access and emotional demands.
Ethics procedures
Ethics procedures are there to protect patients and their data. If you want to do research with patients, your research proposal must be reviewed by an ethics committee. Some of the common frustrations are that obtaining ethics approval can cause considerable delays and navigating the specific procedures and finding out where to file your dossier can be difficult if you don’t know your way around.
It can also be hard to convince people with a medical background of your research procedures as they are not always familiar with design thinking or qualitative methods. Researchers in healthcare and user experience researchers often use different research paradigms: Research in healthcare is often experimental and done to evaluate hypotheses using quantitative research methods and deductive reasoning; User experience researchers often use a generative approach, using an inductive approach and focus on details.
However, the benefit of an extensive ethics review is that it can help you think about your procedure extensively: It gives you a better idea about the feasibility of the project and feedback from an ethics committee could improve your research proposal.
Tips: It can be helpful to ask help from someone that is experienced with the ethics procedure.
Getting access
Getting access to participants for your study can be challenging, because of the limited availability of caregivers and patients.
Caregivers are incredibly busy. In Belgium, physicians are paid by performance: They don’t have a lot of time for extra activities and it can be hard to arrange a meeting.
Finding patients to participle in your study can sometimes be difficult because of their limited availability or mobility. For example, people with congestive heart failure are often not allowed to drive a care anymore, therefore their mobility has decreased. Also, people receiving IVF treatment are quite busy as they are combining their family and working life with an intense treatment schedule.
Caregivers are not only involved as participants, but also as research collaborators as they are often the ones that provide access to participants. Caregivers and patients have a strong relationship as patients put their lives in the hands of their caregivers. As a user experience researcher, you are dealing with a triangular relationship between patients, caregivers and yourself.
As caregivers’ time for consultation is limited, asking them to recruit participants means convincing them of the use of the research project and outcomes. They will not put time and effort in recruiting their patients when they think it is useless or will only cost them time. It is important to build understanding and establish trust and build a relationship.
Tip: Be respectful of other people’s time. Be humble when entering the field and when you talk to experts, because you are there to learn.
Emotional demands
Compared to other fields, there are emotional effects in observing intense medical procedures and talking to vulnerable people that suffer from chronic conditions can challenge researchers.
As people are quite open to talk about their experiences they share a lot of insightful information, the other side is that they share things that we are uncomfortable with or brings us in a situation that we are uncomfortable with. They share stories about relationship problems, divorce, alcohol abuse, depression and loneliness, often in tears. As a user experience researcher, you are there as an observer to capture the experience of another person. We try to gain empathy meaning understanding and sharing the feelings of the other person. However, we are not trained counselors. Still we are confronted with situations that are emotionally charged and challenging and we encounter people that need more help than we can give.
Tip: Before starting a project, think about your position, perspectives and personal experiences with the topic. How do you fit into the context and the environment? Is there anything that could make you feel uncomfortable? Think of strategies to deal with emotional distress such as keeping a diary or talking to friends.
Conclusion
Healthcare is an exciting field where you are exposed to personal stories and topics that you are not exposed to in everyday life; It is a field where you can make an impact and help others. However, for user experience researchers it can be challenging to work in the healthcare domain because of ethics procedures, limited access to participants and emotional demand. As user experience researchers we have to be creative in dealing with those challenges and adjust our way of approaching the field in order for our research to be successful.
Resources
- Dominic Furniss, Rebecca Randell, Aisling O’Kane, Svetlana Taneva, Helena Mentis, and Ann Blandford. 2014. Fieldwork in Healthcare: Guidance for Investigating Human Factors in Computing Systems. Morgan & Claypool Publishers, San Rafael, USA https://doi.org/10.2200/S00606ED1V02Y201410ARH007
- Bob Groeneveld, Tessa Dekkers, Boudewijn Boon and Patrizia D’Olivo. 2019. Challenges for design researchers in healthcare. DESIGN FOR HEALTH https://doi.org/10.1080/24735132.2018.1541699
- Bert Vandenberghe and David Geerts. 2015. Out in the cold, the loneliness of working with doctors and patients. International Conference on Human-Computer Interaction — INTERACT 2015, At Bamberg, Germany, Volume: INTERACT 2015 Adjunct Proceedings.
