Uplyft: IDEA Health Design Award by Vleeway

IDEA HEALTH DESIGN AWARD DOCUMENTATION vic toria lee • communication design • ecuad • 2015

contents 04

introduction

needs assessment

design solution

discussions

conclusion

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introduction uplyft is an online community for young adults between the ages of 20-35 diagnosed with primary lymphedema (PL) to shift its members’ self-perceptions through storytelling. This is done through sharing personal stories, building online and local communities and connections, as well as discovering available support groups in a highly immersive and interactive environment. The aim of this community is to shift its members’ self-perceptions through the power of storytelling. PL is considered a rare, congenital, progressive and chronic swelling affecting primarily the limbs, leading to distortion in size, shape and even function. Affected individuals are scattered across the globe. They have voiced the need to share their stories with others with the same disease. My undergraduate thesis project, Uplyft—the name deriving from the benefits of elevating the affected limbs and the spirits of those with PL—has become an opportunity to respond to this problem space.

INTRODUC TION

i wa s bor n w ith primary lymphedema in my left arm and intestines. The disease is caused by a failure in the lymphatic system and contributes to an individual’s physical, social, emotional, and psychological distress. Without a normally functioning lymphatic system, non-reabsorbed fluid, protein, cells, and fat remain in the system and can cause death within 24 hours. Thus, medical care tends to put emphasis on the physical health of the affected limb while little attention is placed on improving one’s social, emotional, and psychological health. As a young adult who has grown up with this disease, I have found that even with the support of my medical care team, close friends and family, my disease has strongly affected me emotionally, psychologically and socially, especially in relation to how I perceive myself and identify with my body image. Furthermore, primary and secondary qualitative research has revealed that many individuals experience and cope with social stigma. They are “left untreated, unsupported, and suffering unnecessary psychological distress” as the swelling is seen as a constant reminder that there is something wrong with them. In addition, many feel too apprehensive to talk about their stressors or seek acceptance, thus resulting in feelings of isolation. Thus, there has been a pressing need for a space which allows individuals with PL to share their stories, lend support to one another and build a sense of community. I am passionate and determined to bring this project into the lives of people with PL. Uplyft provides an accessible space that brings these individuals together through storytelling and spreads attention and awareness of PL to the general public. Uplyft is an innovative solution to the problems that people with PL and the healthcare community are experiencing.

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needs assessment introduc tion There is a strong need to improve the emotional, social and psychological needs of young people diagnosed with PL as it remains a poorly recognised disease [refer to pg 32 in process book]. The incidence rate of young adults diagnosed with PL are estimated to be 1.15 per 100,000 individuals within a population. Other figures suggest that these individuals comprise 11% of all annual non-cancer-related lymphedema referrals to a service (S4). The quality of life for these individuals is lowered when they are immersed in the day-to-day aspects of managing a chronic disease. They become increasingly cut off from the routines of conventional life, often unable to work, spend time with family, socialize with friends, or move about freely [refer to pg 35 in process book]. They often feel socially isolated as the general population considers the swelling of an affected limb a physical imperfection which is not socially acceptable and desirable [refer to pg 24 in process book]. purp ose The purpose of the needs assessment is to understand how the development of Uplyft, which provides a space for sharing dialogue and connecting with each other, is needed as a design solution to shift self-perceptions of young people with primary lymphedema. The design methodology applied in the process involves qualitative research gathered through literature reviews such as articles written by experts and people diagnosed with PL, online blogs, forums, and films [refer to appendix in process book]. I also conducted observations, user testing and a series of interviews with people diagnosed with PL and their family members, as well as lymphedema specialists from Canada, the usa , and Netherlands. These contacts were referred by and include (but are not limited to): the BC Lymphedema Association (bcl a), Canadian Lymphedema Framework (cl f), Dr. Vodder School International, Nether-

lands Network for Lymphoedema and Lipoedema Patients (n l n et), LymphNotes.com, publication authors and editors, vascular anomalies doctors, occupational therapists, physiotherapists, garment fitters, nurse clinicians and registered massage therapists [refer to pg 11 in process book]. Feedback has also been provided by the Emily Carr community and primary mentors. These design research methods have not only identified a complex system of needs and challenges, but also allowed me to create an analysis of effective models that have demonstrated success in generating community engagement and improving self-perceptions of body image and appearance through storytelling. s tr ate gie s happe ning t oday Current approaches that strive to provide a sense of community for these individuals include social networking platforms such as Facebook groups, which act primarily as spaces to share knowledge about maintaining physical health. There are also online forums where users read and post questions and answers about lymphedema-related topics. However, young adults who are ready to speak up about their stories feel secluded as there aren’t many spaces that respond to their age group and exclusively share concerns relevant to their experiences. In addition, most of the discussion topics are about secondary lymphedema, because most of the active members are affected by the disease. Blogs are the most effective precedence thus far, as they serve as online diaries for users to post their daily experiences while other users can get a more intimate understanding of their stories by reading, commenting, sharing and favouriting posts. analysis There is a desperate need to keep the affected limb hidden as it impacts all aspects of their lives including fashion, education, social relationships and physical activities, and has resulted in conflicts with self-esteem and self-image [refer to pg 36 in process book]. Some reasons include their lack of confidence

NEEDS A SSE SSMENT

and feelings of self-consciousness and restrictions on clothing and footwear. Social activities such as dancing are impossible for some. Close relationships are affected as the swelling has contributed to the damage of self-confidence and inhibition to intimacy [refer to pg 37 in process book]. As a result of their physical difference, they feel isolated from the general public. The need for Uplyft is dire as current approaches that strive to provide a sense of community do not respond to their age group. These young individuals struggle to make sense of their illness and reclaim a sense of self. In the case of contested illnesses, the fact that PL is rare, often makes it difficult for these individuals to have their symptoms acknowledged or treated as they are often faced with skepticism by their doctors. Some of these individuals suffer swelling for many years before being given proper diagnosis and their experiences fill with uncertainty and anxiety. Anxieties have also focused on the lack of interest, knowledge and support among medical professionals which is a common perception among people with PL [refer to pg 32 in process book]. This probes the question of whether lymphedema is actually a rare condition as there are constant misdiagnoses and a lack of awareness in the general public. As affected individuals are spread across the world, Uplyft provides an accessible online space where these individuals can share their stories and connect with others who have the same condition, such that they know they are not alone, and subsequently become a part of a larger community. It is a place where their friends, family and the general public can learn not only about physiological aspects of PL but also the emotional, social and psychological health of people with PL by reading their stories and directly contacting them.

S UMM ARY O F RE S U LT S

1 Young people with PL feel self-conscious and tend to isolate themselves due to their swollen limb. Furthermore, digital and in-person support groups do not respond to the age group of young people with PL. This is a concern as these individuals feel isolated due to their self-perceptions of body image and appearance.

2 The general public is unaware and not knowledgeable about PL. This is a concern as young people with PL suffer from misdiagnosis, mistreatments, and must cope with emotional, social and psychological consequences of being different due to their abnormally sized limb. IMPLI C ATI O NS FO R AC TI O N

1 Young people with PL should have an accessible space to share personal stories, build connections through online and local communities, and discover available support groups.

2 The general public should learn about effects of primary lymphedema including the physiological, emotional, social and psychological aspects.

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design solution the final outcome in order to successfully shift the primary user’s perceptions about their body image and appearance:

1 r educe feelings of isolation by generating a sense of community

2 prov ide accessibility to those in remote areas 3 educ ate the general public about PL

The present system is inequitable when considering the emotional, social and psychological impact of PL on young adults and how not much consideration has been given for the development of a public outreach system specifically targeting their disease. Providing an online space for connection emerged as a clear design opportunity. After exploring a variety of solutions, I focused on the design of a responsive website where these individuals can share personal stories, build connections through online and local communities, and discover available support groups at any point in their day [refer to design on pg 112-120 in process book]. For the purpose of this project, I’ve designed a mobile version of my responsive website to create a richer and more immersive experience based on the key features: sharing stories, direct messaging, and locating available support groups. I have established three design mandates that must be present in

For the purposes of this project and its given timeline, I’ve designed a mobile version of my responsive website to create a richer and immersive experience based on the key features. Uplyft’s home screen mirrors the interconnected lymph system by joining the isolated worlds of individuals into an immersive connected visual galaxy. Within this space, by panning, zooming and tapping, users are able to explore other peoples’ stories and hobbies, and also see who they are following or are followed by. Users can share their written stories and related media content with a customized user group or open them to the public. They are also able to directly message each other and members of the Uplyft staff, add users to their following list, and locate available support groups to generate a stronger sense of community. In essence, Uplyft provides a community space where young individuals with PL can share their personal stories and generate dialogue; the potential benefits of this responsive website are boundless, as it could help individuals with PL shift their self-perceptions towards a more positive light, improve the self-esteem and self-acceptance, find inspiration and support through others, and much more.

DE SIGN SOLUTION

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discussions applying my e xpe rie nce s Social innovation in design requires a combination of empathy, passion and relevant industry experience. My interest in improving healthcare services and public outreach for illnesses first formed through my own experiences as a patient being treated for PL. Through engaging in various projects, this initial interest was transformed into a combination of passion for healthcare industry and empathy for individuals coping with disease. This interest motivated me to seek out work and volunteer opportunities in different aspects of healthcare. During my undergraduate years, I actively collaborate with members of BC Children’s Hospital’s (bcch) Youth Committee (yac) to engage and implement hospital admittance as well as patient safety and care solution for better patient experience at bcch. Currently, I am hired as the creative director of Pave, an application designed to provide a much needed, easily accessible community and educational support system for caregivers of children diagnosed with autism spectrum disorder (a sd). I have worked as a research assistant in a collaborative communication campaign called Patients First! between Emily Carr University of Art + Design and Fraser Health Authorities where we aimed to shift the culture of safety in hospitals by providing tools to stimulate and promote conversation between doctors, nurses, patients, and visitors. I also recognized continuous growth through more challenging projects is needed for me to achieve significant global impact. I recently took up the position of communications manager and designer of the sixth issue of Current, Emily Carr’s design research journal as I am eager to immerse myself in design, research and dialogue with stakeholders. Starting mid-April, I will be designing a communications campaign in collaboration with Emily Carr University of Art + Design and the Provincial Health Services Authority (phsa) to

promote hand hygiene for the BC Cancer Agency. In May, I will be collaborating with bcl a to design and strategize a promotional campaign for their Lymphedema Awareness Day conference in November. It is in Uplyft that I can proudly say that my experience have paid off. I have support from various people diagnosed with PL, their family and friends, as well as lymphedema specialists. I have written “Uplyft: Connecting people with primary lymphedema” to start spreading awareness. The article will be published in May 02, 2015. As demonstrated from my various pursuits, I am highly motivated to constantly creating innovative design solutions in order to bring about positive change in healthcare community. impleme ntation pl an

r esponsi v e w ebsite To achieve user accessibility, Uplyft will be designed by a JavaScript developer using ht ml 5 in order to be compatible on multiple devices and platforms. This allows pre-made content management systems (i.e. MongoDB, Angular) and detailed interactions (i.e. keyword highlighting) to be efficiently integrated. Uplyft will then be user-tested as a native application on Phonegap once the responsive website reaches a critical mass of 20,000 people on multiple platforms. Uplyft will be developed as a native application on Android, Windows and/or iOS mobile if there is a demand. As a means of acquiring investment and funding for development and operation of the project, a Kickstarter campaign will be scheduled to launch during the first year of testing.

DISCUSSIONS

promotiona l ca mpa ign The purpose of a promotional campaign is to gain traffic on Uplyft in order to educate and raise awareness about PL [refer to journey map on pg 96 in process book]. It is composed of a digital and analogue approach. The Google Ads will allow the campaign to reach a global audience through various platforms (i.e. YouTube, Facebook, Reedit, Gmail and Google) [refer to design on pg 138-9 in process book]. The Furthermore, Adword (Googleâ&#x20AC;&#x2122;s online advertising program) enables flexibility in creating and changing the ad campaign at any time, including the advertisement text, settings, and budget. I am planning to focus on using standard text advertising which allows the inclusion of a website link and a description or promotion. With respect to the analogue approach, I intend on distributing information cards, buttons and posters to reach audiences in healthcare facilities (i.e. patient room and waiting rooms) [refer to design on pg 134-5 in process book]. The information cards are designed to motivate and encourage users to engage with the website and learn about the effects of PL through uplifting visual and written language [refer to design on pg 136-7 in process book]. The print collateral will be disseminated through lymphedema specialists, local support groups, and friends and family. The exchange of print collateral between a specialist and patient also facilitates the development of a closer relationship between the two stakeholders. Thus, both materials are created to empower PL individuals, stimulate curiosity and drive traffic to Uplyft. Social media (i.e. Facebook, Instagram, Twitter) will also be utilized to accelerate the word of mouth and online marketing strategy. I am aiming to use these social media tools as a secondary approach in spreading PL awareness to the general population.

FINAN CIAL RE Q U IREME NT S FO R RE S P O NSIVE WE BSITE AND PROMOTI O NAL C A MPAI G Nâ&#x20AC;&#x201A; The next page is a cost breakdown of the responsive website and promotional campaign in their first year of implementation:

minimu m v i a ble product (m v p) for the r esponsi v e w ebsite A medium fidelity prototype will be created for the purpose of raising funds for a Kickstarter Campaign. The next page is a cost breakdown based on an estimate from a professional Motion Graphic Designer.

f eatu res

est i mat ed d u r at i o n ( hrs) x cost p er ho u r = total est i mat ed cost

support from love ones (motion g ra phic designer)

20hrs x $30 = $600

20hrs x $0 = $0

duration (a llows 5-7 days as b uffer tim e )

Basic User Authentication • Username • First name • Last name • Email • Password Setting up users in home screen

4 days

10hrs x $30 = $300

10hrs x $0 = $0

20hrs x $30 = $600

20hrs x $0 = $0

Sign up completion process • Adding user’s information • Adding info about user in drag/drop fashion • Setting up categories

4 days Profile changes process • Ability to change email and password

10hrs x $30 = $300

10hrs x $0 = $0

20hrs x $30 = $600

20hrs x $0 = $0

2.5 days

30hrs x $30 = $900

30hrs x $0 = $0

4 days

Setting up simple admin panel to change

20hrs x $30 = $600

20hrs x $0 = $0

2.5 days

Testing / bug fixes/ deployment

20hrs x $30 = $600

20hrs x $0 = $0

2.5 days

160hrs x $30 = $4500

160hrs x $0 = $0

• Ability to change user’s information Friends Feature • Browsing through users to add as following • Friends listing • Removing a friend Chat feature • Chatting with a friend • Chatting with non-friend ● including files/photos in the chat

total amount in weeks

19.5 days = 2.5 weeks

DISCUSSIONS

uply ft’s k ick sta rter ca mpa ign The campaign aims to raise $25,000 of funding to release a high fidelity prototype to the market. Below is a cost breakdown of the campaign.

u p lyf t ’s ki ckcstart er campai gn ( u kc)

estim ated b udget

Videographer

20hrs x $30 = $600

3.5 days

$500 - $800:

21 days

Google Adwords for ukc • Cost-per-impressions (cpi) • Cost-per-click (cpc)

• #impr es. x $0.5 • #click s x $0.5

duration (a llows 5-7 days as b uffer ti me )

(start from beginning of videography to end of ukc)

“Swag” goods for ukc • Buttons • Poster

$500 - $800

• T-shirt

19.5 days (start from beginning of ukc)

• Thank you cards ukc posters at healthcare facilities

$200

total budget for ukc

$2800 - $3200

uply f t ’s f u t ure p o te ntial Uplyft has a potential to provide value added services that caters to social, emotional, psychological and medical needs through advertisement on the platform. This allows companies with related product or services to access a niche market is accessible in one space. We may also create and provide products catered to lymphedema (i.e. customizable compression

21 days (start from beginning of videography to end of ukc) 24.5 days = 3.25 weeks

garments with unique designs) to provide additional value to their conditions. Revenue from these streams can be used to help fund research, community based activities, social campaigns as well as hire employees to sustain the operations.

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conclusion Uplyft is an online community for young adults between the ages of 20-35 diagnosed with primary lymphedema (PL), where they can share personal stories, build online and local communities and connections, and discover available support groups. Medical care has a gap when considering the emotional, social and psychological impact of PL on young adults and the development of a public outreach system that specifically targets this disease. Uplyft can make a significant impact by not only connecting these individuals together as well as bringing the attention and awareness of PL to the general public. Social/public support programs could be made available and treatment/health care provision could be improved. Uplyft is the social innovation that needs to brought to life as it can go beyond the scope of our imagination and significantly impact a personâ&#x20AC;&#x2122;s life.

CONCLUSION