Can Information Design x Data Humanism Change Health Seeking Behaviour In Women?

Applying Information Design & Data Humanism to Healthcare

Journal 2019

What are Information Design and Data humanism?

Information Design: The practice of presenting information in a way that makes it most accessible and easily understood by users.

Data Humanism: It is the practice of connecting numbers(data) to more human, approachable ideas and behaviours that embrace even the most subjective and imperfect aspects of humans, and the invisible information systems that we live in. To simplify further, data humanism mixes the idea of grasping overall data through quantitative analysis while emphasising the human stories hidden in the data. Data humanism takes numbers from our daily lives too, instead of large quantitative data sets.

Click here for more information on data humanism.

Data humanism projects: Data about self, stories about self visualised

One of the greatest characteristics of information design and data humanism is its simplicity and interdisciplinary nature. A Tinker Studio project “A Visit To The Gynaecologist” brings these aspects to life. The many lessons and tips I learned from this project have been talked about towards the end — stick around?

A Visit To The Gynaecologist

Over a month back I started working on a project around the lack of treatment-seeking behaviour in women regarding their sexual and reproductive health. It is through this project that I innovated at the intersection of Information Design, Data Humanism and Healthcare.

2 out of 10 women in India are diagnosed with PCOD and PCOS

At my workplace of 10 women, 4 have been diagnosed with PCOD or PCOS and 2 have never visited a gynaecologist because they fear diagnoses and a conservative consulation. In a country like India where tradition dictates conservatism, women are unable to speak freely about their pains with a Gynaecologist. The stigma and discomfort behind visiting a gynaecologist is greater than the need for sexual and reproductive healthcare.

I conducted interviews with gynaecologists and women from various backgrounds. On synthesizing insights obtained from these users I began to uncover invisible problems and reasons women refuse to visit a gynaecologist. The following insights lead me to redesign the existing medical history form.

1. Due to the transactional nature of conversations, women are unable to open up about their pain points
2. Women avoid talking about their sexual and recreational activities because they fear being exposed to their parents and society
3. It is easier for gynaecologists to make the right diagnoses when they have an honest record of their patients’ sexual and recreational activities

Redesigning a Medical History Form

Meru Vashisht fills the form (left), User Feedback on original form (right)

I asked extreme user groups to fill out the existing form and walk me through their emotions. Women talked about the cold nature of the form, how uneasy they felt while filling it and how overwhelming the long format of the form was. With their names in bold on the top left corner of the form, they felt uncomfortable revealing information about their private lives.

I consulted with gynaecologists regarding the questions and data in the current form. Together, we identified information that was absolutely necessary for the patient to share and bits of information that could be omitted. With this, I began to put information design x data humanism into play.

How Information Design x Data humanism can be a tool for women to talk about their sexual and reproductive health comfortably?

Anonymity

When coping with an illness, mental or physical it’s tough to talk about it. Interactive data humanism allows communication just through symbols and colour. Patients are able to colour in symbols (flowers in the case of this form) to provide information about their personal lives. Through this, only their information matters. If x has filled the form, only her medical history matters — not her name, not if she’s married or not. After conversations with users, I made sure to add a cover page to the form to give a sense of privacy.

Through these data portraits, one can read details about each person’s life without actually knowing their name, age or gender. (Created by TinkerLabs Team)

“It’s almost like when my bad grades are made public to my peers. That’s what the gynaec form reminds me of, all my insecurities exposed!” — User

Cover page of the redesigned form

Hierarchy of information

When designing information, the designer has the liberty to create a logical sequence. When I set the purpose of the information that had to be communicated I treated the form like a storytelling exercise. The following were some questions that guided the hierarchy of information:

1. What information is to be given out first (and why?)
2. What sequence of information will make sure the user is not overwhelmed?
3. Can the user interact with the information?
4. At what point does the user interact with the information?

The liberty to create a journey for the user and plan out every emotion they will be feeling at every point is the beauty of information design.

A friend at the gynaecologist

While the primary goal of the form is to obtain information from the patient, it is almost equally important to be the patient’s friend from the very beginning. I created the form keeping in mind a Genz woman, and what kind of language would make her feel comfortable. I made sure that the language on the form balances informal 21st-century “ lingo” (language) and important medical information. Like that, the form can be created for different age groups and regions. The key aspect that has to be kept in mind is — the form must be the patients’ friend.

A segment from the redesigned form

Going easy on visual symbols

While symbols are exciting to look at and interact with, it is important to only use one symbol at a time in a medical history form. This ensures continuity, refrains from focusing on the visual language and helps patients concentrate on the details of the form — medical history. The first prototype of the form had a different symbol for every section. After feedback, I realised that users were getting distracted by the different types of symbols and began to read into them too deeply instead of concentrating on the information they had to provide.

Customise the form

When studying the original form, I noticed some segments that were completely unnecessary if the patient is not involved in the activity. For example, if the patient does not smoke, or has not ever been sexually active, the questions that follow would be irrelevant to the patient. For this purpose, I made sure the form could be customised to avoid the issue of cognitive overload.

A segment from the redesigned form

Data Humanism Mindset

Data humanism keeps in mind that data is obtained from humans and not robots. Humans are all different, categorising them into a single statistic may not help them or the gynaecologist. The information must be sharp. Questions like “do you take drugs” is very subjective. As a patient, one could have taken drugs once in their lives, 2–3 times but that doesn’t mean they consume drugs or are in the habit right? This is where data humanism comes in. While creating the form, I found it important to keep in mind questions are asked keeping mind disparity in humans.

Redesigned medical history for (left), Original medical history form (right)

Giving information a personality

The word “human” keeps popping up and I promise it is more important than we think. We want to try to create a form that is more human instead of it being a robot. What do you do when you have a terrible day? You talk to a friend, right? Would you talk to a robot? That asks you transactional questions. While creating a form, I asked questions like:

1. Would a friend ask a question like this?
2. How would I ask a friend to open up about his/her feelings?
3. How can I be there for my friend?

There is much to learn.

I normally carry 2–3 copies of the form in my backpack. I try to hand it out as many times as I can for more and more feedback. When I reflect on this project, I realise there is much to learn about information design, data humanism, healthcare and women. What I have learnt for sure, is how powerful Information design x Data Humanism is for — designers, doctors, and people from all segments of life. When you look analogously, we see this data duo everywhere — from the systematic data design of Dabbawalas of Mumbai to colour coded excel sheets we use to plan our lives. Its already out there. The application and mere character of a data mindset leads to radical innovation and lateral experimentation.

The form created has been circulated amongst gynaecologist clinics in Mumbai. Click here to download the form.