Researching Sensitive Topics in IVY Assistant
Due to the non-disclosure agreement, this case study presents only the approach we used during the process of our research.

My role in IVY Assistant

In spring 2019 I got invited by the CEO of IVY Assistant to join the team of 6 to fight low-success rates of assisted reproductive technologies. I joined the company as a product designer for the initial stages of our product. Later on, I moved more into a UX designer role, that I continue at until today.

The Problem

In recent years, scientific researches found out that the amount of fertility problems occurrences rapidly increases. Many patients with these disabilities, therefore, started looking for a solution of their troubles. Such an increase in demand necessarily led to an adaptation of the offer and thus began a growth of fertility centres using different types of treatments.
One of these methods used in modern medicine to solve such problems is called In-Vitro Fertilization – also called in-glass fertilization. This method substitutes the natural process of egg fertilization inside the uterus by combining sperm with an egg in a laboratory environment by professional – a geneticist.
The whole process of patient stimulation before conducting the medical procedures is super-demanding and requests a large portion of discipline as well as patience. The patient has to take drug doses with a minute-accuracy, has to understand a wide range of medical concepts and sacrifice a huge amount of time. Very often, patients are also overwhelmed with a wealth of information, which in some cases may itself result in failure of the entire treatment [1].
All the obstacles mentioned above cause patients to undergo complicated treatment under enormous pressure. As Andres Negro-Vilar states [2], stress itself can have a significant effect on the woman fertility. Moreover, anxiety and depression resulting from previous unsuccessful treatments significantly decrease the probability of successful fertilization [3]. Obviously, all of these factors are strongly unwanted during already problematic treatment.
If patient overcomes all of these difficulties, she still has only around 20% probability of successfully having their own baby [4].
Based on all these initial findings, we set our main goal to create a service helping patients get oriented in their treatment, and giving them more courage for their uneasy journey.

Research

Desk Research – How IVF Works

Since the first day of deeper research, we found out that one of the biggest challenges will be the exploration of assisted reproduction technologies (ART) field. ART is a rapidly evolving field, containing dozens of methods used to increase the probability of successful fertilization, and all of these methods complement others. Therefore, we decided to firstly research all of the possible information from the desk – specifically from medical students' textbooks combined with web sources.
We studied what diagnosis different patients have, what treatment methods are suitable for them as well as that we've tried to do our first research on who our potential users actually are – are they mostly young/elder women? What are their fears? What preceded their decision to undergo this type of treatment? Is the treatment costly? …
Clustering stickers

Field Research – Clinics

Once we had initial data, we contacted local fertility clinics to explore the treatment from their perspective as well as to get to discuss our patient-journey maps with professionals.
During the first in-depth interview with the head nurse of the clinic, we found out that in many clinics, different professionals focus on different treatment methods. Therefore, we arranged an in-depth interview with each of the available professionals. We let each of them explain how the treatment method works as well as we discussed typical problems, struggles and painpoints of their local patients.
After the first iteration of interviews, we were overwhelmed by an enormous amount of information that had to be analyzed and processed. Based on the analyzed data we improved our existing maps and created new ones for different stakeholders – CJM from the perspective of a nurse dealing with foreign patients, the doctor prescribing the treatment etc.
„During later iterations of interviewing, we found handy to print out the customer journey maps on a huge paper and take it with us. Once we started consulting our current understanding of the treatment, we put the map in front of the professional and let him or her to add, correct or remove anything they miss or do not agree with.“
Once we finished the analysis, we finally realized how complicated the treatments really are and discovered many new blank spots (or more areas than only spots) in our overview. Therefore, we continued with another iteration of interviews with improved materials and different professionals. And another. And another…

User Research – Online Environment

Once we finally had at least some idea of how the treatment works, we became ready to start the actual user research. And again, it was way different than what we expected from regular user research.
Due to our enthusiasm and commitment in the beginning phases, we did not even realize how difficult it will be to find a future, active or ex-patient. We took the fertility topic as basic as any other – but it is not. Fertility problems are an extremely sensitive topic.
Once we’ve realized it, we totally changed our strategy for future user research. Instead of talking directly to patients as soon as possible, we decided to experiment a little bit due to a very specific property of this user group.
As I’ve already mentioned, patients undergoing such treatments are under permanent pressure and very often they tend to look for a way out by sharing their stories with other patients in the same situation online.
We decided to take the advantage of this material and firstly study bloggers and YouTubers undergoing these treatments and sharing their stories online. And it was just an incredible decision. Some of them even make day-to-day video diaries about their treatment, how they feel, how did their check-up went, even what they ate for breakfast, all of that to increase the chance of having a baby. Basically, they create super-detailed diary study and share it for free online.
“Basically, they create super-detailed diary research and share it for free online.”
We used this incredible source of information as the basis of our users' knowledge and after analysis of this easy-to-access data, we finally got to interview patients.
Social Media Screenshots
Minute-to-Minute Online Diary of One of the IVF Patients

User Research – In-Depth Interviews

Although we obtained lots of specific information about a patient’s typical daily routine from online resources, we still needed to discuss some topics (specific and general ones) in person.
As we already knew, reaching such a specific type of respondents is not easy. The first thing that came to our mind was to ask clinics to connect us with some cooperative patients. Unfortunately, medical personal data are subject of strict ownership rules so this way of reaching patients was impassable – at least for this moment.
Therefore, we decided to take advantage of the great online patients’ community and addressed some of the bloggers, who showed their willingness to share their story and not being afraid of talking to people about such sensitive topic.
Because we knew they care about other patients in the same situation and try to help them (they often do Q&As and advice videos for others on their social media), we’ve tried to emphasize our project goals in the addressing messages. We made sure that the introduction explains our work and that the patients do not suspect us as some kind of online freaks.
Last but not least, we also had to think about the factor of the researcher’s sex. Based on our collected information, we expected female respondents to be quite open about their problems but only to others with the same sex. Because we were only two product/UX specialists in the whole company and both of us were male, we were afraid that it might affect the interview fluency. Therefore, we asked two of our female software engineers to help us with this problem. We discussed with them all the prepared questions for our in-depth interviews but we were also ready to teach them how to moderate an interview and hand it all over to them if we found out that male moderated interviews are not working well. Surprisingly enough, they worked perfectly.
We found out that even more than in usual in-depth interviews, the main key in having a smooth and enjoyable interview about such sensitive topic is to build trust in the respondent from the very beginning of mutual communication. We have found that it is key to talk about these things as ordinary thing. This way they are not scared, because they know, that we know. Once we finally met in person (or through online call), we devoted quite a big portion of time to casual chatting, we deeper introduced our project and described why do we urgently need their help. That helped the respondents build way more trust and understanding why they should talk to a random stranger about their malfunctioning uterus or similar topics.

Analysis

All the collected data were then elaborately analyzed.
Firstly, we devoted a large amount of time to define our target users and to the creation of personas. Thanks to that we could then finally refine the information in our existing customer journey maps and enrich them with countless pieces of knowledge we gathered during the interviews.
Customer Journey Map
Customer Journey Map of one of our personas

Conclusion and Takeaways

In some cases, researchers might find themselves in situations where they have to discuss topics that may be difficult for certain individuals to talk about. Moreover, to make respondents to talk about their fertility problems with a researcher who they often see for the first time in their life. For this reason, such issues need to be approached quite differently, with great caution and thorough preparedness.
Researching sensitive topics requires conscientious preparation from other resources to obtain as many information as possible to give the researcher a better understanding of the patient's situation. Fortunately, in present, social media offer the researcher an incredible amount of free information from users’ everyday life minute-by-minute. This understanding is then crucial for being able to build trust with a respondent and might be later used as a springboard for further investigation.
Once the researcher is able to gain respondent’s trust, an in-depth interview becomes an incredible tool to identify the information that might otherwise be difficult to obtain. Face-to-face conversation simplifies communication by engaging empathy, basic human interactions and offers a more natural environment than other methods [5].

Sources

[1] Barrière, P., Avril, C., Benmahmoud-Zoubir, A., Bénard, N., & Dejager, S. (2019). Patient perceptions and understanding of treatment instructions for ovarian stimulation during infertility treatment. Reproductive Biomedicine & Society Online.
[2] Negro-Vilar, A. (1993). Stress and other environmental factors affecting fertility in men and women: overview. Environmental Health Perspectives, 101(suppl 2), 59-64.
[3] Domar, A. D., Smith, K., Conboy, L., Iannone, M., & Alper, M. (2010). A prospective investigation into the reasons why insured United States patients drop out of in vitro fertilization treatment. Fertility and sterility, 94(4), 1457-1459.
[4] PFC Tým. Úspěšnost léčby neplodnosti a jak jí porozumět. Cited 12-07-2020. Available at: https://www.pragueivf.com/cs/blog/uspesnost-lecby-neplodnosti.
[5] Elmir R, Schmied V, Jackson D, Wilkes l. Interviewing people about potentially sensitive topics. Nurse Researcher. 2011. 19, 1, 12-16.