DESN 9002 - Designing for a Digital Revolution - DonateLife

Spectrum Studios Design Proposal

“Social empowerment through innovation” Anum Fatima, Miranda Huang, Aditya Srivastava, Tanushri Saha

Contents Introduction ................................................................. 3 Overview ....................................................................... 4 Problem Space ........................................................... 7 Methodology & Findings ......................................... 9 Digital Solution .......................................................... 25 Reflections .................................................................. 27 Conclusion .................................................................. 28 References ................................................................ 29 Appendix ...................................................................... 30

Introduction In this report, we will provide an overview of NSW Organ and Tissue Donation Service, including a summary of a few central organisational values and strategic visions. We will then provide a vision statement developed in relation to an identified problem space which informed our research, iteration and final design solution. Following this vision statement, an overview of the problem space, including any potential barriers to donation for our identified segment will be discussed in length. The report then will then discuss the research and iterative methodologies used to explore and develop upon our digital solution and strategy for addressing the problem space. Finally, we will conclude by providing insights on how the digital solution- if employed- could be beneficial to DonateLife and NSW Organ and Tissue Donation Service, as well as to the potential donors we are trying to engage.

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Overview Organisation Forming part of the government organisation NSW Health, NSW Organ and Tissue Donation Service (OTDS) is an operational and clinical service which implements the Increasing Organ Donation in NSW Government Plan, a plan established in 2012 by the NSW Government. As outlined in the Increasing Organ Donation in NSW Government Plan, between 2009-2011 NSW was found to be the most poor performing state in Australia in relation to organ donation, despite having the largest database of registered donors via NSW’s RMS registry (NSW Ministry of Health, 2012, p. 7). Following this finding, it was decided that NSW would abrogate the state-based registry model administered through RMS, choosing to instead streamline the register to one national donation model.

“partnering with a range of community, government, education and corporate agencies to promote factual information, normalise the conversation, and discourage misconceptions about donation and transplantation” (OTDS, 2020)

OTDS exists in the public sector and medical sector, and forms part of the healthcare industry in Australia. One of the organisation’s current focuses includes a commitment to “partnering with a range of community, government, education and corporate agencies to promote factual information, normalise the conversation, and discourage misconceptions about donation and transplantation” (NSW Ministry of Health, 2012, p. 21). This statement underscores OTDS’ current goal as an organisation to increase the rate of organ donations in NSW (NSW Organ and Tissue Donation Service [OTDS], 2020).

image: donatelife transparent logo

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A number of strategies currently in place to achieve this goal include (NSW Ministry of Health, 2012): • • •

NSW Health values:

Outreach to culturally and linguistically diverse (CaLD) communities and collaboration with community members to improve existing education spaces and service regarding organ donation Continuing with the ‘opt-in’ model for consent which presently exists in Australia, which empowers individuals to make autonomous decisions Enhancing and building upon specialist training for healthcare professionals to have personal conversations with donor families

collaboration openness

OTDS can also be understood through the strategic vision and values of its parent organisation, NSW Health. Amongst some of the core organisation values of NSW Health, those which align with OTDS regarding the aforementioned goals and strategies include (NSW Ministry of Health, 2012): • • • •

respect empowerment

Collaboration Openness Respect Empowerment

Collaboration is seen in OTDS’ partnerships with community organisations and existing services in NSW to provide improved access to healthcare and information regarding organ donation and its benefits. Openness is fostered through OTDS’ strategy through providing transparent, accessible information to existing and potential registered donors. Finally, respect and empowerment are considered by OTDS in relation to establishing relationships with donor families and providing transparent information, and empowering donor families to make respectful decisions regarding the choices of the donor.

NSW Health’s overarching vision outlined in the 2018-19 annual report details a “sustainable health system that delivers outcomes that matter to patients, is personalised, invests in wellness and is digitally enabled” (NSW Government, 2019).

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Vision Statement “working and collaborating with culturally and linguistically diverse communities to communicate OTDS’ missions and values to more diverse networks”.

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Problem Space Taking the goal of enhancing collaborations with culturally and linguistically diverse (CaLD) communities as our problem space, we aim to foster heightened awareness of organ and tissue donation in those communities through an accessible digital channel or strategy that is responsive to the latent needs of diverse communities.

According to 2018-19 census data, more than 29% of Australia’s population were born overseas (Australian Bureau of Statistics, 2020). Whilst CaLD communities make up a considerable amount of the Australian population however, historically donation rates in these communities has been considerably low (Health NSW, n.d.) OTDS has addressed this problem space through a number of ways, including translating information and online materials into several languages, working alongside community leaders to educate within the community, and developing a number of digital campaigns that seek to raise awareness within multicultural and multi faith communities about donations.

Using a digital ethnography research methodology, we identified primary concerns in regard to increasing organ and tissue donation rates from CaLD communities, which have the potential to be addressed through a digital strategy or channel.

images: DonateLife translated campaign materials and resources

A primary concern for many CaLD and religious communities is the question of whether their religion and/or culture supports organ and tissue donation. OTDS has addressed this concern by collaborating with leaders from within particular communities, who have already established trust relationships with members of the community, and as such are well-positioned for having sensitive conversations surrounding religion, culture, and donating (Federation of Ethnic Communities’ Council of Australia [FECCA], 2017). OTDS has also created a position statement section on their website, which hosts statements from religious leaders and figures from CaLD communities on the position of a religion on organ and tissue donation. However, there may be space for more innovative solutions and strategies to this problem space, which will be explored by conducting research and iteration processes.

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potential barriers for donation

Another recurring theme in the digital ethnographic research was that migrants often bring their understanding of organ and tissue donation protocols from their respective home countries to Australia, and are not necessarily re-educated on potentially different donation protocols in Australia by direct means.

access to knowledge in Australian context

A limitation in current research in Australia on whether culture and/or religion influences attitudes towards organ donation is that it is difficult to isolate the parameters or boundaries between religion and culture, to determine which of these elements impact attitudes toward donation (Wakefield, Reid & Homewood, 2011). For the purpose of this report, we have decided to use the terminology culturally and linguistically diverse (CaLD), as this encompasses elements including culture, ethnicity, language(s) spoken, and in some instances religious affiliation. Our intent is not to determine whether we should design a strategy for a religious community or cultural community, but to address the improvement of donation rates in multicultural communities in Australia more broadly speaking.

establishing trust within community

Our mission is to communicate the value proposition of OTDS in culturally-specific and appropriate ways that are aligned with the values of CaLD communities. We believe that this is a potentially valuable space to design a digital solution for, based on the high percentage of the population that CaLD communities represent, and the fact that CaLD individuals are historically less likely to donate. Additionally, whilst there have been community engagements and campaigns in relation to multicultural communities and donation, there have been less digital innovations in this space which may be worth exploring further.

prior knowledge of donation from home country

concerns about religion or culture supporting donation

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Methodology & Findings

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Digital Ethnographic Research We conducted digital ethnographic research on a number of online resources to achieve a deeper understanding of the types of barriers facing CaLD communities in relation to organ donation. This information was both analysed and synthesised using a ‘5 Whys’ framework, which allowed us to identify the core issues in our problem space which could be addressed through a digital strategy (see Appendix A).

Beginning with the problem of low percentage donation rates in CaLD communities, it became apparent that misinformation played a critical part in inhibiting individuals from considering becoming donors. While we found that OTDS does have adequate resources online to address misinformation, such as position statements from religious and cultural leaders, translated materials, and translated campaign videos, these were either not immediately and conveniently accessible to CaLD individuals. In short, while the information is there, we found it is not necessarily reaching the intended communities.

From the digital ethnographic research, the need for a digital solution which addressed the following values became apparent:

trust building

community leadership

We determined the need for a more direct digital strategy that reached CaLD individuals within their communities, as opposed to relying on those individuals seeking out the relevant information themselves.

cultural responsiveness

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Affect Framework To understand how DonateLife uses its digital channels to engage and encourage people to register as donors an affect framework from their existing strategies and campaigns was constructed, we selected DonateLife’s ‘Thank You Day’ Campaign as the digital stimulus and went through the campaign posts on their Instagram and Facebook channels, from which we were able to devise their intended ‘Value Proposition’ and Digital Hedonic Rhetoric which was then mapped to the Affect Framework.

On analysing the digital campaign of ‘Thank You Day’ (Appendix B), we were able to map DonateLife’s affect framework, from their statements online and in their brochures their intended Value proposition was devised which was ‘We want to create awareness and normalize organ donation and transplantation and make health systems viable and accessible for patients’ which creates the message of their digital hedonic rhetoric as improving lives, creating a better future, building trust, compassion and aspiration (Figure 1). DonateLife’s posts on their digital channels appreciated existing donors for registering and helping patients in need, they also told stories about the donors and their families and what encouraged them to register, having these stories told helps potential donors to relate to the common people and families who are involved in the process of donation and helps normalize it as anyone can register as a donor without any issues.

On analysing the ‘Thank You Day’ campaign it was observed from the comments and reactions that the posts evoked awe amongst the followers which lead to the affect of feeling happy and admiration for how people were being saved by donations made by the donors, the posts instilled a feeling of pride amongst the followers which in turn triggered intrigue which led them to explore more about how the process of organ donation works which created hope for a better future and encouraged them to get more involved by registering as donors themselves.

The framework helped us better understand how DonateLife’s digital campaigns were reinforcing their value proposition through their various digital touchpoints.

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Figure 1: OTDS’ existing value proposition and digital hedonic rhetoric

Intended Affect Framework

Figure 2. Intended framework (left) vs. current strategy (right) for achieving affect outcomes

From our insights that OTDS could greatly benefit from a culturally specific framework for addressing the needs of CaLD individuals in order to increase organ donation, we designed an intended affect framework (Appendix B). This intended affect framework was benchmarked against the previous affect framework based on OTDS’ “Thank You” day campaign, to consider where the organisation had potential to improve.

There are in fact many similarities between the existing affect framework and intended affect framework. However, one of the main differences we discovered was the need for a digital engagement which not only stressed the importance of organ donation in improving lives and having compassion for others, but also that these qualities can exist whilst also aligning with one’s cultural or faith beliefs.

In regards to affects, we found that a digital engagement which evokes curiosity from the potential donor in the early stages as opposed to awe would be more effective for CaLD individuals (Figure 2). Curiosity is a powerful affect in that it allows the individual to look inwards and ask themselves questions to challenge existing beliefs or understandings.

Further, we found that a crucial part of a digital strategy going forward was the need for an understanding that it is not possible for all individuals to immediately register themselves as donors. Rather, it is vital when responding to CaLD individuals to stage a digital interaction that allows them both time and resources to consider exactly how their culture and/or faith aligns with organ donation. This insight was a major consideration for us when determining our digital solution to the problem space.

Figure 3. Reframed digital hedonic rhetoric and value proposition based on donor segment needs 12

Digital Channels Analysis In order to understand the digital sphere of DonateLife, their digital channels were assessed in depth. Using a number of frameworks, we analysed how the channels are perceived, what their main content is and a few comparisons with similar digital channels in the same industry (see Appendix C). Following the general analysis of the channels, we probed into the campaigns, pages and posts that DonateLife directly or indirectly aimed at CaLD communities. We needed to comprehend how the targeted audience was being engaged on these platforms and explore the improvements that may be made to maximise engagement with our intended donor segmentin a digital solution. We further assessed the digital touchpoints and typologies for the digital channels that DonateLife has, to determine the most appropriate channels that we could further develop and iterate upon.This helped us in reaching our digital solution because there were gaps in how the organisation was interacting with CaLD communities, highlighting the absence of such communities on the online platforms DonateLife currently operates.

Given the evidence from the examination from their digital channels, a further recommendation is for the digital strategy to be put across their digital channels to show inclusivity and empathy towards these minorities.

The digital channels research included an overall review of these channels, which comprises of how the channels are perceived when they are viewed initially, what their main content is and a few comparisons with similar digital channels in the industry broadly. Following the general analysis of the channels, we probed into the campaigns, pages and posts that DonateLife directly or indirectly aimed at CaLD communities.

Lastly, we researched the digital touchpoints and typologies for the digital channels that DonateLife has (see Appendix C). This is to depict which typology they fall under and to describe the purpose their digital touchpoints may be serving, which again adds to us understanding audience engagement and the gaps in DonateLife’s digital channels that need development.

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The digital channels of NSW Organ and Tissue Donation Services were mapped onto the channel mapping framework to grasp their purpose. The channel mapping framework shows the selection of one type of customer, which is Generation Y in this instance and depicts the experience that the adjacent brand values are delivering.

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Questionnaire To better understand the knowledge that citizens possess about organ and tissue transplantation in Australia a survey was created, its focus was to assess how different religions, faiths and cultures affect the decision of an individual to register as an organ and tissue donor. The survey collected responses from 16 participants of various faiths and cultures and yielded interesting results with varied views and thoughts including doubts, not having proper information, religious views on donation etc. The findings were then used to help devise the digital solutions required to address the doubts and issues.

On analysing the data collected from the questionnaire (Appendix D) it was observed that most respondents belonged to the young students and professionals with 10 of the participants belonging in age range of 1825 and 4 in the 26-35. The respondents were from different ethnicities which included Indians, Bangladeshis, Australians among many others, this sample size gave us an idea about how aware and informed the people from different faiths and communities are about the process of organ donation in Australia. The major sources of information were found to be schools and universities, medical professionals and social media channels for the respondents. Most respondents were not registered as an organ donor in Australia with 14 respondents saying ‘No’ and only 2 respondents saying ‘Yes’, on further inquiring about why they are/ are not registered the responses included not being informed about it, their families not being comfortable about it, not feeling comfortable themselves, etc. This can be attributed to the lack of information and awareness about organ donation, as per DonateLife most religions and faiths allow organ donation for transplantation.

On posing the question about their hesitations and concerns about donation, most respondents said they had no hesitation regarding it while some respondents said their family values and faith affected what decision they took regarding it. Respondents felt that they didn’t have adequate information to convince themselves and their families about the process of organ donation, feeling its difficult to register for it, this reaction can again be attributed to not being able to find adequate information about organ donation in accordance with their faiths and culture. Most respondents felt that the information available is only somewhat accessible to them as they are not aware about which source to trust and which source of information they should consult for their relevant religion and faith. The findings from the questionnaire helped us find our problem space, even though DonateLife’s website has all the information needed for specific religions and faith communities, it is not easily accessible to them and because of that the people are not well-equipped to make an informed decision.

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Personas To further understand our intended users, we mapped out user profiles (Appendix D) and personas which were created based on questionnaire results and digital research (Appendix D).

Personas helped us categorise common patterns for potential donors. Two personas were created as a result that showed the variances in participant responses from the questionnaire data.

After creating the personas, a user journey map was made by choosing one of the personas.

The reason ‘James Carter’ was chosen for the user journey mapping was because he was most suited to our problem space, and allowed us to explore the possible motivations, goals, needs and concerns of cultural diverse individuals in relation to our digital strategy. The user journey map aimed to understand all of the touchpoints individuals would interact with when engaging with our digital solution. This not only helped in understanding the pains and gains that a potential donor might have when engaging with our solution, but further aided in improving upon our solution through reiterating and reframing the problem.

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Preliminary Iterations Our iteration process began with ideation sketching of a number of basic digital solutions that sought to address the problem space (Appendix E). Following this, a digital solution based on the strongest elements of previous iterations was then developed into a low fidelity prototype (Appendix E).

The basic features of the low fidelity prototype include a QR feature placed on a CaLD community specific campaign. This would be the first touchpoint for individuals, and the campaign posters would ideally be placed in locations that are easily accessible to or often frequented by members of CaLD communities. Preliminary considerations in this phase of the iteration included libraries, shopping centres, community centres, train stations, and places of worship.

The next touchpoint within the low fidelity prototype is a CaLD specific landing page (which the QR directs to) which conveniently repackages existing info and resources in more accessible way. At present, the DonateLife website landing page mainly features prompts for users to register, donor stories, frequently asked questions, and news stories. This is not immediately useful for individuals from CaLD communities who have more pressing concerns about whether it is possible for them to consider donating in the first instance.

The curated, culturally-responsive landing page features existing information from the website such as position statements, translated materials and so forth. In addition to this, the low fidelity prototype features new digital features: a campaign video from leaders from different communities, and a basic support chat feature.

The preliminary intention behind the campaign video is to provide a short, insightful video that evokes curiosity in the individual to find out more about whether organ donation is a viable avenue for them to explore. Videos are a largely accessible format, as they can be easily translated through closed captions, and allow the individual to assume a passive role where they can listen and absorb information, even if they have limited technological capacity, time or energy. Unlike other campaign videos, this campaign would be a lot more culturally specific and responsive, as it draws from members of various CaLD communities. Further, the video would address the concerns or questions of CaLD individuals that were uncovered in the digital ethnographic research.

Finally, a chat feature integrated into the DonateLife website as seen in the low fidelity prototype responds to any further concerns that a potential CaLD donor might have that require a follow up in a more meaningful, engaging manner. We determined that a chat feature where potential donors can speak to a support team would help address uncertainty and misinformation in a more personal manner. An issue not addressed in this phase of iteration was the question of language support. As it stands, English would likely be the default language for communication in a chat feature which poses a limitation for individuals who are either unable to communicate in english, or perhaps more confident in other languages compared to English.

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DonateLife

Talk to our Support Team Layla Jones

DonateLife

Hi! I’m Layla Would you like to chat about organ and tissue donation?

“RESPECTING CULTURES, SAVING LIVES”

About Us say about What does your culture or religion organ and tissue donation?

We offer support services in multiple languages, Press 1 to see the list of languages and select your preference.

Frequently Asked Questions

1 Community Leader Statements To find out more

Register as a Donor Today

Talk to our Support Team Find us on :

Figure 4. QR mock up, and prototypes of the digital solution

Type your message

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High Fidelity Prototype To better understand our digital solution for our problem space, wireframes and mock-ups were constructed to show how the user is going to navigate on the proposed channel, using the findings from different methodologies it was decided that the digital solution needs to be easily accessible to the users and the navigation through the channel should be quick and hassle-free so that the user is able to access the information relevant to them without going through a plethora of information and content. First the Wireframes were constructed using the Low fidelity prototypes, putting different aspects of the digital channel in place and then mock-ups were developed to give the solution a finished and more robust look and feel (Appendix E).

From the low fidelity prototypes, the idea of having QR code as the first point of interaction was developed further, we decided to have community specific campaigns and their posters placed in different locations where CaLD community members frequented to, on scanning the QR code the individual will be redirected to the DonateLife CaLD specific website which has everything that an individual would need to understand about organ donation according to their religion and faith.

The individual will be greeted with a short insightful video which would show how CaLD community members have become donors and also received transplants through DonateLife’s efforts, the next option contains an “About us” feature which takes the individual to learn more about DonateLife, the next option contains “Frequently Asked Questions” feature which takes the user to CaLD specific frequent questions which can help the user easily clear some of their common doubts that they might have, the next option were the “Community Leader Statements” which contains videos and quotes from different community leaders encouraging and supporting organ donation, this would help build up trust in DonateLife’s mission as it will be coming from someone that the individual recognises and trusts. After going through the various ways of learning more about CalD specific organ donation, the user is given the option to “Register as a Donor” which redirects them to the DonateLife’s registration page where the individual can register as a donor.

If the user needs further information or clarifications a personalized chat feature was also provided which can be used in different languages as per the users needs, the users can ask specific questions regarding their religious affiliations and faiths and can learn more about how they can get involved and make a difference by becoming a donor. Finally, access to DonateLife’s other digital channels like Instagram, Facebook, Twitter and Youtube are provided where the users can explore and learn more about what other campaigns and events are being held to encourage organ and tissue donation for transplantation.

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Think Aloud Protocol We used the think aloud protocol methodology on DonateLife’s existing website, as well as on our low fidelity prototypes to test user experience (Appendix E).

Our observations on the user experience of the existing DonateLife website included information access issues in terms of the multicultural resources being less convenient to find, and language barriers in terms of English being the primary mode of communication.

An insight garnered from the think aloud protocol performed on the low fidelity prototype is that for the chat function to be a useful digital addition to DonateLife’s strategy, it really needs to consider efficiency and functionality. Things to consider in this domain include the time it takes to respond to an enquiry from a potential donor, whether the chat function is accessible in terms of language, and technological limitations users may have.

We also found that when a prompt in a physical or digital setting is available to individuals (such as a physical campaign poster or online video), curiosity is evoked which stimulates interest to find out more regarding cultural positions on organ donation. While our strategy centres digital innovations, in relation to our intended potential donor segment, it is important for there to be an initial physical touchpoint (in this case the QR code) which draws individuals into the digital solution space.

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Usability Testing To understand if the digital strategy introduced fulfilled the needs and values of the users and potential donors, a usability testing exercise was conducted where participants were given a list of tasks to carry out after they were explained how they reach the webpage (i.e. after scanning the QR code). Subsequently, they were asked to fill out the usability testing scale (Appendix E) and were asked a few questions regarding their interaction with the digital solution. The high & low fidelity prototype was used to conduct the testing. The following tasks were assigned to the participants: 1.

2.

3.

Scroll through the webpage and watch the donation stories Navigate to the FAQs and try to find what might interest you Return back to the homepage and choose which ever option you deem fit and engage with it

The following questions were asked from the participants to understand more about how they viewed the solution: • Which option did you choose when you returned back and why?

• Which tab/option do you think is missing?

• Any feedback Many participants were exhilarated by the overall concept because they saw they could relate to it on a personal level and want to see more organ donation organisations incorporating religion and diverse communities while increasing their reach and engagement with potential donors.

With regards to the webpage, majority of them reached out for the community leader statements reason because they wanted to know their stance on organ donation.

Some of the participants mentioned that a “religion” tab should be introduced because they would want to know about what their religion says about organ donation rather than scrolling through the community leader statements and figuring out which statement/video falls under their religion. One participant also mentioned how there should be an “About Us” section instead of a video because people using this webpage may not have time to view a minute or 2-minute long video and would want to reach for the information that they require straightaway.

From the testing, it can also be seen that some individuals may not be familiar with the idea of QR codes and may be intimidated to use it because they don’t completely understand it. There was also a suggestion to add steps with regards to registering so people can know the entire process of donation.

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Digital Solution Collaborate

Engage

with existing digital channels and touchpoints, make it more accessible

the CaLD communities using community specific campaigns and resources

Connect

Access

the CaLD communities with DonateLife and OTDS through a simplified channel

Provide easy access and navigation to hard to find content and resources

Customise Give freedom to the user to change and customize the language

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Digital Solution After defining our problem space, we wanted to create a digital solution that engaged CaLD community members whilst being respectful to their faiths and cultural perspectives and provide them with enough information and knowledge about organ donation, so they are equipped to make an informed decision.

As CaLD community members make up for a considerable amount of the Australian population, their involvement in DonateLife’s mission would increase the rates of organ donation considerably. DonateLife has tried to address and engage the communities through various ways but we believe there’s still potential to take things to the next level, hence we wanted our digital solution to be an extension to what is being done on ground, instead of being a separate entity in itself.

The resources and information that are required by an individual from a CaLD community is all available online, but to access it the individual needs to navigate through a number of channels and redirects to reach the final touchpoint which is relevant to them. Based on our research we discovered people lost interest and got confused while navigating through so much information and content and eventually gave up on learning and exploring further, which prompted us to devise a solution which would ease their navigation by providing them with relevant information according to their faith and cultural alignment instead of bombarding them with too much content.

Using the Affect Framework, we defined our value proposition – “We want to create awareness surrounding organ donation and transplantation, and to make health systems viable, accessible and personalized for patients and donors” which conveyed the message of our digital hedonic rhetoric as earning trust, caring for community, safety, virtue, goodness, donating aligned with beliefs, positive influence and improving lives. We discovered that our digital strategy needs to evoke curiosity among a potential donor as it encourages them to get a new perspective on their existing beliefs and considerations. Further we found that an individual from a CaLD community might not be immediately willing to become a donor, they might require time and further consultation to think it through.

Keeping these things in mind our first aim was to engage the CaLD community members, based on our research and iterations we decided that having community specific DonateLife Campaign posters with a QR Code embedded in it can be placed at various places where the community members frequented like libraries, parks, community neighbourhoods etc. Any member who wants to learn more about organ donation can simply scan the QR code and they will be taken to the main landing page of our digital strategy to help them learn more, clear their doubts and concerns and take a decision, whether to register as a donor or not.

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Reflections The strongest element of our design methodological exploration was the research into the donor segment that we identified, as well as our deep understanding of the problem space. We believe that the strength of our project was in the ability to apply design frameworks such as digital ethnographic research, persona building and user journey mapping, questionnaires and so on, to more accurately understand who exactly our potential donor was within the CaLD community. Further, our understanding of the problem space of encouraging CaLD individuals to seek out information regarding whether their culture or faith allowed them to donate, and to be informed and empowered to make the right donation decision. This deep understanding of the problem space was generated from rigorous secondary desktop research, as well as primary research such as usability testing, think aloud protocols and so on. From these frameworks, we were able to identify potential pain points inhibiting individuals from donating, motivations, needs and goals for donating, and to tailor a digital solution responsive to these needs.

However, we do believe we could have benefited (time and group member capacity permitting) from further iterations on our design solution, to improve and extend upon the digital solution itself. Performing additional primary research with potential users of the digital solution would have garnered more generous, accurate insights which would have enabled us to undergo more extensive iterations to better tailor a digital solution for our intended donor segment.

An additional next step for our design would have ideally involved creating higher fidelity prototypes of the digital solution, including the chat support, curated landing page, and the campaign itself. This consideration is especially true of the campaign, which we were unable to prototype in a more meaningful manner. Had we been able to prototype the campaign itself, we would have been able to perform user testing on the campaign, and consider various physical and digital formats that would enable us to reach the identified donor segment.

Finally, further considerations of how we could apply our intended affect framework to the design space would have benefited us in terms of potential donor/user satisfaction and outcomes, creating more of an affective appeal for the design, and ensuring that the cultural and faith backgrounds of our user are respected carefully.

Further iterations of the design would have allowed us to explore the viability, feasibility and desireability of the following potential additions to our design solution: • Exploration of the possibility of the DonateLife support team being reachable to potential CaLD donors via channels commonly frequented by CaLD and migrant communities (e.g. WhatsApp, Kakaotalk, WeChat) • Development of a strategy for marketing the campaign collateral across various DonateLife channels • Considerations for how we could digitally collaborate with CaLD community leaders beyond position statements, in a more active engagement Overall, we are pleased with our research and methodological approach to understanding the user. If this design strategy were to be considered by the organisation, we would undergo further research and perform further iterative methods on the design to ensure utmost accessibility, usability and attractiveness for CaLD individuals who could be potential donors.

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Conclusion Our proposed digital solution aims to act as catalyst between the diverse communities and DonateLife and OTDS’s mission and vision to increase donation rates throughout Australia, using the existing information and content available online and repackaging it in a way that a common person is easily able to access and learn about organ donation without having to struggle with going through multiple channels. Through a simplified but informative digital channel and strategy, DonateLife and OTDS would be able to engage more people and make them more aware of the importance of organ and tissue donation.

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References Australian Bureau of Statistics. 2020. Migration, Australia. Retrieved from https://www.abs.gov.au/ausstats/abs@.nsf/mf/3412.0/ Australian Government Organ and Tissue Cultural Authority. (n.d.). Position Statements. Retrieved from DonateLife, (2009, May). DonateLife (@DonateLifeToday). Retrieved from https://twitter.com/DonateLifeToday DonateLife. (2019, December 2). Annual Report. Retrieved from https://donatelife.gov.au/about-us/strategy-and-performance/annual-report-0 DonateLife. (2019, November). DonateLife’s Instagram photo: “Last Sunday, DonateLife Qld’s Alana Cresswell was invited to both the Brisbane Sikh Temple at Eight Mile Plains and the Sant Nirankari...”. Retrieved from https://www.instagram.com/p/B40yzWogAFg/ DonateLife. (2020). DonateLife’s Facebook Post: “Uni students all across Australia have been seeing a lot of magenta with DonateLife staff…”. Retrieved from https://www.facebook.com/ DonateLifeAustralia/posts/10157235620347956?__xts__[0]=68.ARD5XmJ_eMkko9xgx-PWfcyH2scXSLkDM_TzCBp5LwVwqLAS43l6whH_RHIXGNkC5qhwxqmmMtsBRvnX8CAWKD2_ bBQHsq_cVDMe0ZYYiKtsScUFdJ_nJiWQ1mX9NkaBmcqwZhFSP8wQ77QHhY95L62n7vd-uiahlTwl4gXB8iNkE1roCXpv7H_PSL52mcXr0DnFvDlaFRj-zZvVMu3LmfbvU5V-EeZKetUknmMLWT7q45dOa6y__ffqD5hID1mBVI9ueh0x9drZK3cpKT5dIuewFdqVgMIAbPl--TVJVgrD0pkELmMZRTswLbTycSsdH-oVY6_4-7Dzo6-dBTFX&__tn__=-R DonateLife. (n.d.). Saffron Day. Retrieved from https://www.facebook.com/SaffronDayDonation/ Federation of Ethnic Communities’ Councils of Australia (FECCA). (2017). Engaging CALD communities in organ and tissue donation discussions, (47) 1-36. Retrieved from http://fecca. org.au/wp-content/uploads/2015/06/FECCA-Mosaic-issue-47.pdf Health NSW. (n.d.). Organ and Tissue Donation Multicultural Campaign. Retrieved from https://www.mhcs.health.nsw.gov.au/about-us/campaigns-and-projects/completedprojects/ organ_and_tissue_donation.pdf https://donatelife.gov.au/resources/multicultural-and-faith-communities/position-statements NSW Government. (2019). Value based healthcare in NSW. Retrieved from https://www.health.nsw.gov.au/Value/Pages/value-based-healthcare-in-nsw.aspx NSW Ministry of Health. (2012). Increasing Organ Donation in NSW Government Plan 2012. Retrieved from https://www.health.nsw.gov.au/organdonation/Publications/increasing-organ-donation.pdf NSW Organ and Tissue Donation Service. (2020). NSWorgandonationZoomrecording.mp4 [audio filet]. Sydney: Karla Straker. Retrieved from canvas.

Organ and Tissue Authority. (2019). DonateLife | Organ and Tissue Donation . Retrieved from https://donatelife.gov.au/ Organ and Tissue Authority. (n.d.). DonateLife. Retrieved from https://www.facebook.com/DonateLifeAustralia/ SC, D. L. (2009, July). Donate Life SC (@DonateLifeSC). Retrieved from https://twitter.com/DonateLifeSC Wakefield, C. E., Reid, J., & Homewood, J. (2011). Religious and ethnic influences on willingness to donate organs and donor behavior: an Australian perspective. Progress in Transplantation, 21(2), 161-168.

APPENDIX A

Research - Online Ethnography

Data Record

Interpretation (what could this data mean)

Themes (what common patterns do you see)

Source

“While there is insufficient research on similar numbers among the CALD communities of Australia, we do know that the ethnic and/or cultural background of a potential donor and their family can impact the likelihood of consent for donation.”

The cultural or religious background and demographic of a donor/ donor family can influence the donation decision factor

Cultural demographic, decision-making, consent

FECCA, p. 4

An important aspect of organ and tissue donation awareness and in increasing registrations on the AODR, in particular in CALD communities, is to engage communities in the discussions.

It is important to engage communities in discussion around organ and tissue donation

Community, awareness, conversation

FECCA Mosaic Issue, p. 6

DonateLife has a range of resources and information in 18 different languages and for many faith groups to help community leaders in the discussions with their community, to provide background information and statements of support, and to encourage further registrations on the AODR.

Translating resources and informative material into language that can effectively communicate to different cultural, ethnic and faith groups is important

Language, translation, religion, community leadership, information, access

FECCA Mosaic Issue, p. 6

Involving the communities in organ and tissue donation discussions requires resources in appropriate language, cultural

It is important to be culturally aware and sensitive when engaging with communities about

Cultural awareness, FECCA language, community

awareness and on the-ground engagement.

organ and tissue donation

Many people are unaware of the position that their religion has about organ and tissue donation, or may feel that their cultural beliefs do not allow it.

There is a gap in knowledge for CaLD communities regarding whether their religion supports donation

Religion, uncertainty, donation

FECCA, p. 7

Other countries also have different systems and protocols surrounding organ and tissue donation compared to those in Australia. People may bring these views, understandings and experiences to bear when considering whether to register as an organ donor.

People have different understandings regarding donation depending on their background context, which may not align to Australian protocols leading to misinformation

Misinformation, background, donation protocols

FECCA, p. 8

Most religions support organ and tissue donation and see it as an act of merit, charity, virtue, divine ordinance, and selfless giving that helps to preserve the sanctity of life.

A number of religions do in fact support donation, despite misinformation in this area

Religion, values

FECCA, p. 8

people have their own perceptions, understandings and feelings towards donating organs and tissue.

Responding to these affects may be important in encouraging people to become registered donors

Affect, emotions, donation

FECCA, p. 20

Language and cultural knowledge is key.

It is important to communicate to stakeholders with cultural sensitivity in mind, as well as language barriers

Language, cultural sensitivity

FECCA, p. 21

Australia’s CALD communities are diverse and the strategies planned

Understanding the potential donors position and

Literacy, beliefs, community, donation

FECCA, p. 21

must consider facts such as English language skills, literacy level, community structures, health, cultural and religious beliefs, whether there are organ and tissue donation campaigns in their home country (is this common or rare), whether the CALD community is mainly comprised of refugees or migrants, and whether the community has newly arrived or have been settled in Australia for a while.

Multifaceted strategies using a range of different ways to reach people and promote the messages

context is vital in order to have conversations in them that are culturally sensitive and specific

conversations

it is essential to have someone from the community itself to work with their own people as an outsider will need time to develop trust and build relationships, in particular when working on a topic such as organ and tissue donation that will for many communities involve personal discussions on dying and grieving.

Engaging members of the community or community leaders who already have established relationships and trust is a useful way of having discussions within specific communities about donation

Community, trust, relationships, sensitive conversations

FECCA

studies have shown that families have at times expressed their frustration that organ and tissue donation wasn’t offered because of their cultural and or religious background.

Potential donor families demonstrate affects such as frustration as cultural assumptions are made that it is too ‘difficult’ to get families to consent to donation, and therefore not worth

Frustration, cultural assumptions

FECCA, p. 28

it.

“In line with previous international research, females and younger Australians were more likely to report willingness to donate than were males and older individuals”

Wakefield (2011) P. 164

“Respondents who described themselves as having stronger religious beliefs held less favorable attitudes toward organ donation and were more likely to oppose organ donation”.

‘Wakefield (2011) P. 164

xxx 5 Whys

Notes sheet

Problem: Donations from CaLD communities in Australia are low in percentage

Why....

Because many people from CaLD communities are misinformed regarding organ and tissue donation, and can lack general awareness around donation protocols specific to Australia

Why....

Because they possess their own knowledge around donations from their respective homelands, and may not have convenient access to relevant information about organ and tissue donation in Australia.

Why....

CaLD communities have diverse cultural, ethnic and religious backgrounds, and speak many languages. Official channels attempt to provide translated materials to address this, but this does not always reach intended communities, or they do not trust the information source.

Why....

They receive information from other sources, such as community leaders, or community-based social networks (i.e. whatsapp groups, conversations with community)

Why....

They are more likely to trust people from within the community, with whom they already have established trust, and built relationships.

This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.

Designed by the authors of “Design. Think. Make. Break. Repeat. A Handbook of Methods” (BIS Publishers) www.designthinkmakebreakrepeat.com

APPENDI XB

DESN9002 | University of Sydney | karla.straker@sydney.edu.au

Affect Framework VALUE PROPOSITION

Message

We want to create awareness and Normalize Organ Donation and Transplantation and make health systems viable and accessible for patients

DIGITAL HEDONIC RHETORIC

Reinforces value proposition

Improving lives, Better Future, Trust, Compassion, Aspirational Quality

COGNITION

EVOKES Awe

DIGITAL STIMULUS

Informs digital stimulus selection

Wanting to know more about it, considering getting involved,

CREATES Hope

Thank You Day Campaign

BEHAVIOUR

AFFECT Happy, Pride, Admiration

Work sheet by Design Innovation Team University of Sydney, School of Architecture, Design and Planning

TRIGGERS Intrigue

Find more information, Register for Organ Donation

Wewantt ocr eat eawar enesssur r oundi ngor gandonat i onand t r anspl ant at i on, andt omak eheal t hsy st emsv i abl e, accessi bl eand per sonal i sedf orpat i ent s.

ear ni ngt r ust , car i ngf orcommuni t y , saf et y , v i r t ue, goodness, donat i ngal i gnedwi t hbel i ef s, posi t i v ei nf l uence, i mpr ov i ngl i v es

donat i ngwoul dal l owmet o i mpr ov et he l i v esofpeopl e, whi l st al i gni ngwi t hmy cul t ur al / f ai t hbel i ef s

cur i osi t y

sat i sf act i on

Hope, pr i de, admi r at i on

I ndi v i dual r egi st er sasdonor orseek sf ur t herconsul t at i onwi t h communi t yl eader sandor gani sat i ons

st i mul at i on

APPENDI XC

APPENDI XD

QUESTIONNAIRE DATA

1. How old are you? (16 Responses)

2. Please select your gender. (16 Responses)

3. What is your Cultural background? (Ethnicity) (16 Responses)

4. What are the major sources of information for your knowledge about Organ and Tissue Donation? (16 Responses)

5. Are you a registered Organ and Tissue Donor in Australia? (16 Responses)

6. If you are not registered, would you consider becoming an organ donor? Why/why not? (14 Responses) Yes May be /A I am fine with donating, but my family would not approve of my decision I’m not sure. I don’t know much about the topic, so I’d wait until I’m more informed before making a decision.

Yes. If close family/friends require a transplant.

No No, I don’t feel comfortable Don’t want to reveal Never thought on this Yes, I just haven’t stumbled upon this Yes definitely. There’s no reason not to for me, since it could help someone. Better for organs to help someone than rot in a hole Yes, to possibly help people who are in need of usable organs Nil

7. Do you have any religious affiliations? (7 Reponses) No Islam Yes Yes No/ Atheist Nope Technically Christian but not practicing Non-Practicing Catholic

8. What hesitations or concerns might you or your family have about becoming an organ donor?

Does your cultural or religious background factor into these concerns? (16 Responses) Yes, they say it prevents from reincarnation.

Nothing My mother is a devout Buddhist and believes that if you donate an organ, you will be reincarnated incomplete.

Not Sure No hesitations or concerns. No other factors play into account. ….

No hesitation None No idk I have never thought about it. Maybe I’m just scared.

Yes Nope Not Sure No More traditional members like grandparents might still resist the idea of “someone poking around in your body” but that’s just an older generations view They wouldn’t have hesitations because my family is primarily in the medical field and they understand the importance and shortage of these resources Nil

9. Do you feel like you have an adequate or up to date understanding of organ and tissue donation protocols and processes in Australia? Please describe your experience. (12 Responses) No Yes yes, it is a set of formalities made on document stating that you want to donate organs.

Yes. Can easily search laws on the Gov website and get pamphlets at the gp No; from what I know, the majority of people awaiting donations are unable to get it due to the lack of supply, and it's also hard to get viable organs after death as the extraction process must be rapid, and the organs must be undamaged.

No i don't have an adequate understanding.

I have Not really, haven’t thought about it No, no education on such Not particularly. I don’t think young people are properly educated on this subject None, I have not tried to search Yes. I’m well educated and well informed.

10. Does your cultural or religious background influence your decision to register as a donor? (16 Responses)

11. How religious would you consider yourself to be? (16 Responses)

12. To what extent do you feel that messaging regarding organ donation in NSW is accessible to your community? (16 Responses)

APPENDI XE

Think-aloud Protocol – FAQ and all other concerns from user.

User Goal/ Task

Interface Part/Location

Verbal Protocol ●

Non-English background speaker user browses the homepage and uses menu bar to find out relevant information and questions in their native language

● ●

Donatelife Official Website

●

● ●

●

● User gets more knowledge about donation process and answers of his own coming up questions via FAQ.

● ● A section of menu bar on landing page

● ●

●

Observations

“I wish to donate through this organisation but all their large reading and documents are in English, I feel tired to read” “Is there any translate function or ere is no “choose a language and button on their homepage? region” tab or select box shows “As a government organisation up on their landing page. they should have online booklets Australia a multicultural in multiple language”, countries with large number of “The Multicultural and faith new immigrants, some of them resources section in resources might already participated in might have donation stories and donation before in their home from my home country”, country. This inconvenience “Let me see what was their might stop the growth of donate process” potential donor and new “Oh, above these resources and donor. booklet there is a select box that I can pick my language to read “After I clearly understand all the question I concerned then I can go register for donation securely”

Some questions about the er might has to go a very long way to donation process and the find FAQ. It has to go home experience of donors are not page, then test on each option covered in those booklets” in menu bar. Although it is under the very first tab “About “Do they have FAQ at all?” donation” but it is still not very “Not at the top and bottom of the convenient to some impatient page” and careless users. Only the tab “Let me directly search “Join the Donor Register” has “Donatelife FAQ on google“ unique background colour in “Yes, there it is. Its hidden inside the menu bar, FAQ should be of the menu bar under the tap as attractive and important as “about donation” Register tab, because it might “It is not obvious enough and I be the first step to make user go deep about this organisation have to remember the steps of and its experience. finding it for next time ”

Think-aloud Protocol – User Experience on the DonateLife Website

User Goal/ Task

Interface Part/Location

Verbal Protocol

Observations ●

● ●

● Find out about Organ Donation in Australia

Google Search, donatelife.gov.au ● website ● ● ●

●

On the website find out information regarding your faith and religious affiliation

●

donatelife.gov.au ● website ●

●

“I’ll google organ donation in Australia”, “The top result is something called DonateLife, just gonna click that”, “Is this a private organisation?

Looks too colourful and nice to be a govt. one”, “There’s ‘Join the Donor Register tab as well, that was easy to find”, “About donation column is there”, “Ok, now to the donation process window”, “It shows how to register as a donor”

●

●

●

“Is there still a thing like that?

My family has always been ● supportive of it, they say it’s your decision to make, that’s why I’m in process of registering back in India as well”, “It doesn’t say anywhere on the ● homepage about religion or faith, where do I look for it?”, “Who can donate? tab maybe?”, “There’s a tab for ‘Are there ● religious restrictions?’ it’s a PDF with all different religions and if organ donation is acceptable in their culture or not.”, “So, since I’m Hindu, mine says Organ donation and transplantation are both acceptable in my religion,

A simple search on google about organ donation shows up DonateLife website as the primary result, so it’s quite easy for someone who wants to learn about organ donation to access their website.

The website looks appealing and informal, unlike usual govt. website The link to register for donation is provided on the homepage and has been highlighted with a different colour scheme to make it visible.

The ‘About Donation’ tab is right on the landing page, so its easily accessible, on the ‘About donation’ page, the process of donation is clearly mentioned, and the user is able to navigate to it without any issues.

There is no mention of Multicultural and Faith Communities on the Homepage, the user felt lost as to where to look for it.

Even in the ‘About Donation’ page there is just a single PDF file on Who can donate, which mentions different religions and if it’s acceptable to donate or not, but no detailed information is provided.

The user didn’t even look at the resources tab to find any information, even though it’s on the front page, but only saying ‘Resources’ didn’t provide the user any direction and they skipped browsing it altogether

that’s good to know, I was aware about it though”

Think-aloud protocol

User goal / task

Interface part / location

Verbal protocol

Potential donor sees the campaign poster and scans QR code

Campaign poster located in physical space e.g. public library, place of worship, shopping centre

“So, I think the QR code is nice and big so it makes me also want to know where it could lead me” “It would be interesting to see what my culture says about donating”

User navigates the landing page to find relevant information about their culture/religion and donating

Website landing page that potential donor sees following scanning the QR code

“It takes me to this page on my phone. There’s a video up the top. I hope it doesn’t play automatically because that would freak me out” “Its interesting that the FAQs are above the statements. I always think of FAQs as being further down the list” “Community leader statements would be interesting to click through.

Although there would be the question of what leaders you pick depending on what community” “The talk to the support team function is interesting. I am wondering do I get to talk to them immediately? Like on chat, or by email, or talk later on the phone, I’m interested in what happens there”

User clicks on campaign video to view it

Embedded campaign video on landing page

“It sounds like personal testimonies from the looks of things. It’s colourful. It looks like I have to turn my phone off rotation lock.”

User clicks on chat to support team button to find out more information

Chat support function

“Oh this is great. If I have a particular personal question, then I can ask. Is it okay to donate? Who gets my donation? Does the person administering know my values? That would be helpful to know” “I guess I would be interested to know how long it takes for the person to respond.”

“If they answer my question quickly I can make a decision sooner about whether I will donate”.

Usability Testing Interview Transcripts Participant 1 (Samer), 25 years old: ● Which option did you choose when you returned back and why? o Community Leader Statements because I wanted to see what this tab is about as it does look a bit vague. Is the meaning of community here with regards to a religious community or a cultural community? Because some cultures might have different religions under them. ● Which tab/option do you think is missing? o A “religious debates” tab or something specifically for religions because a lot of religions have issues with organ donations. ● Any feedback o Looks good but the webpage can be improved further and obviously would be able to give detailed feedback on the visuals with a digital prototype.

Participant 2 (Lamiyea), 21 years old: ● Which option did you choose when you returned back and why? o FAQ’s because if I have a question, in that option it’ll be there. Rather than watching the video, I don’t have to listen to someone’s story because that’ll take long – I’ll just straight go for the FAQ’s. ● Which tab/option do you think is missing? o No one has the time to watch a video rather give a pointers tab like “about us or about what we do”. You don’t have time to watch a 2-minute video ● Any feedback o Everyone uses smartphones so it’s easy to use, it’s very good and straightforward but you have to think about getting to the people who will engage with this because more than posters in worship places, the QR code should be on social media – (your eyes don’t go on the walls for the QR codes) so celebrities can give a shout out and advertise the QR code or something.

Participant 3 (Javeria), 24 years old: ● Which option did you choose when you returned back and why? o Community Leader Statements and FAQ’s because I need to know from a religious point of view what the leaders have said and the latter to see if my other concerns are answered. ● Which tab/option do you think is missing? o “nearest place to donate” in the case of donating organs like a kidney so I can know where I can help out and if it is near to my place. ● Any feedback

o

I would like to know if there are any costs involved (might be in the FAQs). I also think with QR codes, not everyone can easily use them, like except Snapchat, I don’t think I’ve ever used QR codes and that can resist people in using this. I’m not sure as in do I need to just open my camera to use the QR code or do I need to download an app?

Participant 4 (Amnah), 23 years old: ● Which option did you choose when you returned back and why? o Community Leader Statements because I would be curious to see what they’ve said and even though I don’t know the stance my religion has on organ donation I would just feel like knowing what their statements are. ● Which tab/option do you think is missing? o Maybe a religion tab where you can choose your religion and find out more about it. ● Any feedback o I just think I’d be able to give a detailed feedback with the digital prototype.

Participant 5 (Sarah), 23 years old: ● Which option did you choose when you returned back and why? o Community Leader Statements because they must be knowledgeable on this so want to know their point of view. ● Which tab/option do you think is missing? o I don’t think there is any missing. ● Any feedback o I think add steps to donate somewhere like register and then how do you get shortlisted and/or how you’re registering so people basically know the entire process before they are registering plus which hospitals are taking organ donation and if it’s like a kidney or liver or something or bone marrow so what are the health risks to donor if any maybe people would want to know that upfront so they are less hesitant to register if there are not many health risks.

Usability Testing Scale