The anxiety that comes from being diagnosed with an illness can take a toll on an individual’s life. And for many that find themselves in this position, such diagnoses tend to catapult them and their families into uncharted territories. While healthcare providers often do their best to address as many of these patients’ questions, many pressing concerns only become clear in casual interpersonal conversations. Taking this into account, a group of students from Universitas Gadjah Mada a few years ago developed Pasienia — an application that caters to some of the social needs of these patients and their loved ones. The app has gone on to win the Google Business Group Stories competition, and today is a growing social platform for patients coping with the same illnesses. During our recent Lab on Wheels outreach roadshow in Yogyakarta, we had a chance to chat with Dimas Ragil Mumpuni , Pasienia’s co-founder and chief operating officer.
Q: Tell us more about what inspired Pasienia.
In 2015, a few friends and I participated in an innovation initiative on campus, which sought to explore tech-based solutions for social issues in Indonesia. Based on our research and discussions, we found that many patients who suffer from chronic health conditions often feel neglected. In addition, while patients are coming to terms with their diagnoses, they tend to look for friends and communities that they can relate to. Medical practitioners, while helpful, can only give professional advice, but they cannot truly empathise with a patient’s experience. Because of the sensitivity and privacy around illnesses, it is also not the easiest thing to identify people who have the same illness. So, some patients start with Googling to find community groups or forums online. Considering all of this, we designed the application with the aim of connecting these individuals with other people who suffer from the same illness for the purposes of sharing their experiences, exchanging useful information and enabling a general support system.
Q: What are some of the features of Pasienia?
Once first-time users download the app, as part of the signing up they are prompted to provide responses to a pair of questions. First, they are given a selection of “illness related areas” (for lack of a better term) to choose from based on their interest. That lists includes: cancer, immunity, hormonal, heart and blood vessel, infection, maternity, nerve, mental health, blood, kidney and lungs. Next, users are asked to describe their role, as either patient, caregiver, a community or an expert. Depending on the selections made, the users will be able to access an interactive timeline for viewing, posting and commenting on related statuses. The app also has a chat feature, which enables users to dialogue with others on the platform, including sharing questions about issues and getting feedback based on the experiences of others. There is also an option for persons to “Join Community” where users can participate in a more-tailored discussion based on one of the main thematic areas. As we continue to refine the app based on the users’ need, one of the features we’re looking to add will allow experts to collaborate with community members and moderate certain group discussions.
Q: How is Pasienia different from other forums, such as Facebook groups and WhatsApp groups?
Pasienia is unique because of its health focus, and it has features that are not available on other platforms. For example, a WhatsApp group can only accommodate a maximum of 256 members, while a community group within the Pasienia app can have more than 1000 members (we intentionally designed the app this way to enable communities with a large following). At the moment, WhatsApp and Facebook groups do not have criteria for selection of members. Instead membership registration is typically done by adding a phone number or signing up with an e-mail address, respectively.
Given the health issues and sensitivity, as the app developers, we believe it is important for people to verify their identities for authenticity in order to contribute to discussions. Therefore, to use Pasienia new users have to provide some basic information about themselves, as well as upload a copy of their IDs (users may choose to use a pseudonym for their display name though). But again, we understand the need for anonymity and so people can still sign-in without completing the verification… the catch is that they are restricted from posting, commenting on statuses and joining communities. To enhance Pasienia as a social platform, we are planning to add: Pasienia Life (an e-commerce feature giving patients access to products and services related to their conditions) and Pasienia Health Programme (a premium service where users can join an online learning group and follow a programme curriculum developed by experts to accomplish specific health goals).
Q: Any plans to scale up in the near future?
User feedback is important to consider for future development of the app. When we first launched Pasienia in February 2016, we received about 3000 downloads. Now, we have a 4.3 out of 5 star rating on Google Play, and we actively monitor the feedback users share on there. In addition, we are in the process of exploring our business model, and part of that involves engaging with more communities to eventually have a broader reach. At the same rate, we’ve also been conducting usability testing to better understand the needs of the users, and we hope to use those findings to improve the next version. In the past, people enjoyed the benefits of online health portals for the purpose of reading information; however new trends in healthcare technology have revealed benefits beyond that. For example, many health apps these days are designed to monitor our health habits: track our sugar levels, record our walking distance, suggest best sleeping times, among others. In other words, the tools have become more personalised and customisable. With virtual health too, people can have better access to information regarding efficient and safe health services. Therefore to stay relevant, Pasienia may have to incorporate similar features in the coming years. But again, this depends on the users’ feedback and how that changes over time.
Pulse Lab Jakarta is grateful for the generous support of the Government of Australia.
Our smart-up Indonesia series attempts to showcase the data innovators and entrepreneurs that are shaping the nation. The articles should not be interpreted as product or service endorsements by Pulse Lab Jakarta or any of its partners.