We at Uism pride ourselves in our curiosity. No place is that better exemplified than in the connections we strive to make with a wide variety of people, and expand our knowledge and understanding. These Chance Chats are an opportunity to share what we’ve learned from the people we’ve come across, especially the kind of people who would be difficult to connect with and have the chance for an in-depth conversation. While one person will never be the definitive exemplar of any topic, it’s a viable explorative research strategy to direct future studies and where to dive in deeper.
About this Episode
With many Pride events happening both locally in Japanese cities and in other parts of Asia in the fall, this first episode of Chance Chats is a good opportunity to explore a topic that weighs heavily among LGBTQ+ discussions, but one that extends far beyond the single community. While technological advances have curbed a positive test result from being the death sentence it used to be, and concerted efforts by medical and nonprofit organizations to combat the stigma attached to an HIV+ status have made considerable progress, there is still much to be understood and improved, especially in a country like Japan. The core questions at the heart of this Chance Chat were:
- What has been your experience as a patient in Japan receiving treatment for HIV?
- What improvements could be made to your patient experience, both for HIV-related and unrelated treatment?
- What are your feelings towards medical institutions that advertise being HIV+ friendly?
Methodology
This Episode was conducted as an in-person, 1-on-1 in-depth interview between the participant and the moderator. The moderator prepared a set of questions to guide discussion prior to the interview session to use the time to the utmost. To maximize the participant’s comfort and peace of mind, the interview was conducted only between the two of them at a location of the participant’s choosing.
It should be noted that this episode’s topic is looking at HIV from a UX point of view, not a medical point of view. For proper medical advice and assistance, please consult with a medical professional.
Episode 1: Participant Profile and Main Audio Clips
Participant Profile
- Nickname: Ichitaro
- Age: 27
- Gender: Male
- Language of Chat: Japanese
Note: In accordance with the privacy agreement of the interviewee, all audio recordings have been reenacted by our staff.
Audio 1: Introduction
By all accounts, Ichitaro is a young, active Japanese man. Like many Japanese men his age, he moved to the urban metropolis of Tokyo from a smaller, regional area. With the foundations of his profile established, the moderator asks him about his status.
Audio 2: Initial Thoughts on HIV
Ichitaro’s surprise and disbelief, in spite of extensive scientific evidence and the aforementioned movie itself noting how treatable and manageable HIV has become, is not at all surprising. Even with extensive advancements in HIV treatment and education, the disease still carries a very negative stigma in Japan, even among younger generations. But were those initial days after being positive all that scary?
Audio 3: First Treatment Experience
For the top-grade professionalism and care shown to him at what was surely a low, vulnerable moment for him, Ichitaro gave the Fukuoka system full marks. It is good to see the Japanese healthcare system taking steps to manage patient privacy, especially when the most at-risk age demographic–20s to 30s–is also the population more likely to be living with a parent or other family member. While Fukuoka is by no means a rural part of Japan, most Japanese residents have access to proper treatment and counseling in even the most remote areas (see the appendix for some example resources). In fact, the most trouble for Ichitaro came when he had to move away from Fukuoka for Tokyo.
Audio 4: Moving and Transferring Treatment
Again, Ichitaro’s user experience is not unique, even to HIV+ patients. While major Japanese hospitals keep more agreeable hours, clinics, particularly specialized ones, are open at times that often conflict with Japan’s typical work or school schedules. This is an issue for anyone, but for people suffering from a chronic illness that requires regular care, limited clinical hours needlessly harms a patient’s working life and increases stress. Outside of working hours, Ichitaro had some suggestions for improvements to his routine medical treatment.
Audio 5: Suggested Improvements to Treatment Process
Japan has made great efforts recently to digitize or allow remote completion of as much of the patient process as possible to alleviate some of the burden on a burgeoning healthcare system. Some examples include professional consultations via video call, health-monitoring applications, and mail-in home test kits. While not everything can be done at home, the more medical processes can be resolved outside the doctor’s office, the more users can have the freedom to manage their health on their own time, and the more medical professionals can focus their limited time on matters that require full, in-person attention.
In the latter part of the interview, Ichitaro was asked more about his medical care outside of his HIV treatment and his feelings towards such places advertising as “HIV-friendly.”
Audio 6: Non-HIV-related Medical Experience
Here, Ichitaro provides a different point of view on companies advertising diversity and inclusion. Through prior studies our firm has run, it is evident that in the age of influencer culture, Japanese people strongly resonate with companies and brands that express or match their identity. That is a consumerist lens, however. In the medical field, it is probable that the expertise and access to treatment is more important than any personal connection. Related, Ichitaro may be alluding to how he sorts his identity as an HIV+ individual as a private, personal identity rather than a public, social identity. An appeal such as “HIV-friendly” satisfies the personal identity, but a public appeal has a consequence of association, potentially signaling to an outgroup (e.g. HIV-) that users of a product or service are a part of the ingroup (HIV+), effectively “outing” an individual’s private identity. Ideally, there would be no strong sense of ingroups and outgroups to require concern on status. In the meantime, while companies showing active support towards HIV+ individuals is appreciated, it may indirectly put such individuals in harm’s way through over-appealing.
Key Take-aways and Conclusion
- Japan’s awareness regarding HIV and its implications is still low, and thus, lean negative, even among youths.
- However, Japan’s process for treatment, support, and protection of privacy allow newly HIV+ individuals to recover and live as normal a life as before infection.
- Further digitalization and remote access to medical treatment and consultation will improve maintenance of health for all Japanese individuals, specifically those requiring regular or more frequent service.
- Overt advertising of support for HIV+ persons by unrelated medical institutions is not a significant factor in their decision to choose those services, and may even reduce their motivation to use due to fear of association.
It should be noted that the above are insights from one individual speaking from personal experience and should not be taken as definitive evidence nor as representing the entire experience of a group. They can, however, point to areas for further research and exploration, and we at Uism are well-equipped to conduct such research with the level of detail and delicacy as necessary. Our experience in medical research and cultural background of both domestic and international practices enables us to present and analyze sensitive areas within the Japanese context and present them in a comprehensive way beyond these borders. Please feel free to reach out for a consultation, and look forward to our future exercises of research curiosity in the next episode of Chance Chats.
Audio 7: Final Thoughts
About the Author
Ross Miller
Ross utilized his background in languages and East Asian cultures to improve academic and business practices across Japan. He recently acquired his MBA in Business Leadership and Innovation, with a focus in systems thinking, design, and social business. A professional “bridge builder” in diversity management, he wishes to utilize those talents as the perfect liaison in international UX research. Though only spending 5 years in the Japanese city of Fukuoka, he’s picked up the habits and accent enough to be mistaken for half-Kyushuan on several occasions.